Resources
Find useful NF resources in one place.
Search Hub-created tools and carefully selected resources from NF organizations, government health agencies, research libraries, rare-disease organizations, and professional support services.
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Search the resource collection226 of 226 topic placements across 39 unique resources
View 39 matching resources across 226 topic placements
Care & Health67 topic placements
Finding NF Care19 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Challenges in the Transition from Pediatric to Adult NF CareReview documented transition barriers, unmet needs, and priorities for improving the move into adult NF care. | NF1 transition roundtable contributorsClinical and patient collaboration | Young adults · Families & caregivers · Professionals | White paper | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Find an NF ClinicSearch and compare NF clinics and specialist programs by location, age group, condition, and care type. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Directory | Open resource | |
| Find an NF Clinic Network providerSearch recognized NF clinics in the United States and Canada and confirm current program details directly. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Directory | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Find an NF doctorBrowse an additional NF clinic and doctor directory with program and contact information. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers | Directory | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Guide for Transitioning to Adult CareReview NF1-PN transition considerations for patients and caregivers preparing to move from pediatric to adult care. | NF CollectiveNF organization | Young adults · Families & caregivers | PDF guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Guide to Genetic Testing in NF and SchwannomatosisUnderstand why genetic testing may be considered, what the process involves, and what results may or may not explain. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Appointment ToolkitUse a complete appointment toolkit with reminders, a health summary, symptom and question preparation, and follow-up planning. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF toolkit | Open resource | |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF symptom and follow-up trackerDocument changes, effects on daily life, questions, follow-up responsibilities, and next steps. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF | Open resource | |
| One-page NF health summaryOrganize diagnosis, manifestations, monitoring, treatments, medications, imaging, and care-team contacts for a new provider. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Pediatric-to-adult care transition checklistPrepare records, responsibilities, referrals, prescriptions, and the handoff from pediatric to adult NF care. | LIC NF HubCreated for this Hub | Young adults · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Preparing What to SayBuild clearer questions, requests, follow-ups, summaries, and messages while controlling what personal information is shared. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Interactive tool | Open resource |
Symptoms & Health Concerns12 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Explore the NF BodyExplore NF by body system, symptom, and whole-person concern, then connect each topic with questions and research. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF symptom and follow-up trackerDocument changes, effects on daily life, questions, follow-up responsibilities, and next steps. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF | Open resource | |
| NF1 information and resourcesReview NF1 information and downloadable materials about diagnosis, manifestations, genetics, and related concerns. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · General learning | Web guide and downloads | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Treatment9 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| ClinicalTrials.gov NF study searchSearch registered NF and schwannomatosis studies, eligibility, locations, recruitment, and posted results when available. | National Library of MedicineGovernment research agency | People with NF · Families & caregivers · Researchers | Study registry | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Clinical Drug PipelineBrowse an NF-focused view of treatment development and active clinical research with links to official study records. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Researchers | Interactive directory | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Discovery LabExplore connected publications, funded projects, registered studies, and maintained research sources by topic. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Researchers · General learning | Interactive research tool | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NORD RareCare patient assistanceExplore assistance programs for medication access, diagnostics, caregiver support, insurance costs, and other needs; eligibility varies. | National Organization for Rare DisordersRare-disease organization | People with NF · Families & caregivers | Assistance program directory | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Surgery9 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| ClinicalTrials.gov NF study searchSearch registered NF and schwannomatosis studies, eligibility, locations, recruitment, and posted results when available. | National Library of MedicineGovernment research agency | People with NF · Families & caregivers · Researchers | Study registry | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Guide to Genetic Testing in NF and SchwannomatosisUnderstand why genetic testing may be considered, what the process involves, and what results may or may not explain. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Pain / Daily Function13 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Explore the NF BodyExplore NF by body system, symptom, and whole-person concern, then connect each topic with questions and research. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Appointment ToolkitUse a complete appointment toolkit with reminders, a health summary, symptom and question preparation, and follow-up planning. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF toolkit | Open resource | |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF symptom and follow-up trackerDocument changes, effects on daily life, questions, follow-up responsibilities, and next steps. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF | Open resource | |
| NF1 information and resourcesReview NF1 information and downloadable materials about diagnosis, manifestations, genetics, and related concerns. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · General learning | Web guide and downloads | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Mental & Emotional Health5 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Explore the NF BodyExplore NF by body system, symptom, and whole-person concern, then connect each topic with questions and research. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| NF Groups and CommunitiesBrowse established NF groups, official communities, and peer-support spaces across major platforms. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Directory | Open resource | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Life & Navigation44 topic placements
Transition to Adult Care5 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Challenges in the Transition from Pediatric to Adult NF CareReview documented transition barriers, unmet needs, and priorities for improving the move into adult NF care. | NF1 transition roundtable contributorsClinical and patient collaboration | Young adults · Families & caregivers · Professionals | White paper | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Guide for Transitioning to Adult CareReview NF1-PN transition considerations for patients and caregivers preparing to move from pediatric to adult care. | NF CollectiveNF organization | Young adults · Families & caregivers | PDF guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| One-page NF health summaryOrganize diagnosis, manifestations, monitoring, treatments, medications, imaging, and care-team contacts for a new provider. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Pediatric-to-adult care transition checklistPrepare records, responsibilities, referrals, prescriptions, and the handoff from pediatric to adult NF care. | LIC NF HubCreated for this Hub | Young adults · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Six Core Elements of Health Care TransitionUse a widely adopted framework and tools for planning, transferring, and confirming the move from pediatric to adult healthcare. | Got TransitionProfessional healthcare initiative | Young adults · Families & caregivers · Professionals | Framework and tools | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
School / College7 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Glossary+Search layered plain-language definitions covering NF, care, research, insurance, work, school, and advocacy. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals · General learning | Searchable guide | Open resource | |
| Job Accommodation NetworkExplore workplace accommodation ideas and educational guidance about the interactive accommodation process. | U.S. Department of Labor-funded serviceProfessional support service | People with NF · Young adults · Professionals | Information and consultation service | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Work / Employment11 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Find an NF Clinic Network providerSearch recognized NF clinics in the United States and Canada and confirm current program details directly. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Directory | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Find an NF doctorBrowse an additional NF clinic and doctor directory with program and contact information. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers | Directory | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Glossary+Search layered plain-language definitions covering NF, care, research, insurance, work, school, and advocacy. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals · General learning | Searchable guide | Open resource | |
| Job Accommodation NetworkExplore workplace accommodation ideas and educational guidance about the interactive accommodation process. | U.S. Department of Labor-funded serviceProfessional support service | People with NF · Young adults · Professionals | Information and consultation service | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| Patient Advocate FoundationFind case-management and financial-aid information for eligible patients facing insurance, access, employment, debt, or cost barriers. | Patient Advocate FoundationPatient-advocacy nonprofit | People with NF · Families & caregivers | Support and assistance programs | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Six Core Elements of Health Care TransitionUse a widely adopted framework and tools for planning, transferring, and confirming the move from pediatric to adult healthcare. | Got TransitionProfessional healthcare initiative | Young adults · Families & caregivers · Professionals | Framework and tools | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Insurance8 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Appealing a health-plan decisionReview federal starting information about internal appeals and external review; follow the deadlines and instructions in the actual plan notice. | HealthCare.govGovernment health agency | People with NF · Families & caregivers | Web guide | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Glossary+Search layered plain-language definitions covering NF, care, research, insurance, work, school, and advocacy. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals · General learning | Searchable guide | Open resource | |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NF Organizations DirectorySearch nonprofit organizations, companies advancing NF care, and businesses supporting the NF community. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Directory | Open resource | |
| NORD RareCare patient assistanceExplore assistance programs for medication access, diagnostics, caregiver support, insurance costs, and other needs; eligibility varies. | National Organization for Rare DisordersRare-disease organization | People with NF · Families & caregivers | Assistance program directory | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Patient Advocate FoundationFind case-management and financial-aid information for eligible patients facing insurance, access, employment, debt, or cost barriers. | Patient Advocate FoundationPatient-advocacy nonprofit | People with NF · Families & caregivers | Support and assistance programs | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Financial & Travel Assistance6 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Appealing a health-plan decisionReview federal starting information about internal appeals and external review; follow the deadlines and instructions in the actual plan notice. | HealthCare.govGovernment health agency | People with NF · Families & caregivers | Web guide | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| NF Organizations DirectorySearch nonprofit organizations, companies advancing NF care, and businesses supporting the NF community. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Directory | Open resource | |
| NORD RareCare patient assistanceExplore assistance programs for medication access, diagnostics, caregiver support, insurance costs, and other needs; eligibility varies. | National Organization for Rare DisordersRare-disease organization | People with NF · Families & caregivers | Assistance program directory | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Patient Advocate FoundationFind case-management and financial-aid information for eligible patients facing insurance, access, employment, debt, or cost barriers. | Patient Advocate FoundationPatient-advocacy nonprofit | People with NF · Families & caregivers | Support and assistance programs | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
Rights & Advocacy7 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Appealing a health-plan decisionReview federal starting information about internal appeals and external review; follow the deadlines and instructions in the actual plan notice. | HealthCare.govGovernment health agency | People with NF · Families & caregivers | Web guide | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Glossary+Search layered plain-language definitions covering NF, care, research, insurance, work, school, and advocacy. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals · General learning | Searchable guide | Open resource | |
| Job Accommodation NetworkExplore workplace accommodation ideas and educational guidance about the interactive accommodation process. | U.S. Department of Labor-funded serviceProfessional support service | People with NF · Young adults · Professionals | Information and consultation service | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| Patient Advocate FoundationFind case-management and financial-aid information for eligible patients facing insurance, access, employment, debt, or cost barriers. | Patient Advocate FoundationPatient-advocacy nonprofit | People with NF · Families & caregivers | Support and assistance programs | Prepare a request or questionCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Preparing What to SayBuild clearer questions, requests, follow-ups, summaries, and messages while controlling what personal information is shared. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Interactive tool | Open resource |
Learning & Decisions60 topic placements
Understanding NF16 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Explore the NF BodyExplore NF by body system, symptom, and whole-person concern, then connect each topic with questions and research. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Visit original | |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Visit original | |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Visit original | |
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Visit original | |
| Glossary+Search layered plain-language definitions covering NF, care, research, insurance, work, school, and advocacy. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals · General learning | Searchable guide | Open resource | |
| Guide to Genetic Testing in NF and SchwannomatosisUnderstand why genetic testing may be considered, what the process involves, and what results may or may not explain. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Guide | Visit original | |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Visit original | |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Visit original | |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Visit original | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Visit original | |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Visit original | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Visit original | |
| NF StorylinesBuild a guided pathway through connected NF explanations, research, care, advocacy, glossary terms, and milestones. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| NF1 information and resourcesReview NF1 information and downloadable materials about diagnosis, manifestations, genetics, and related concerns. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · General learning | Web guide and downloads | Visit original | |
| Test Your NF KnowledgeTake a rotating 20-question NF knowledge challenge with difficulty choices, explanations, and maintained sources. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive learning tool | Open resource |
Genetics9 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Visit original | |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Visit original | |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Visit original | |
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Visit original | |
| Guide to Genetic Testing in NF and SchwannomatosisUnderstand why genetic testing may be considered, what the process involves, and what results may or may not explain. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Guide | Visit original | |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Visit original | |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Visit original | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Visit original | |
| NF1 information and resourcesReview NF1 information and downloadable materials about diagnosis, manifestations, genetics, and related concerns. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · General learning | Web guide and downloads | Visit original |
Research6 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| ClinicalTrials.gov NF study searchSearch registered NF and schwannomatosis studies, eligibility, locations, recruitment, and posted results when available. | National Library of MedicineGovernment research agency | People with NF · Families & caregivers · Researchers | Study registry | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Clinical Drug PipelineBrowse an NF-focused view of treatment development and active clinical research with links to official study records. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Researchers | Interactive directory | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Discovery LabExplore connected publications, funded projects, registered studies, and maintained research sources by topic. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Researchers · General learning | Interactive research tool | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF StorylinesBuild a guided pathway through connected NF explanations, research, care, advocacy, glossary terms, and milestones. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource |
Clinical Trials6 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| ClinicalTrials.gov NF study searchSearch registered NF and schwannomatosis studies, eligibility, locations, recruitment, and posted results when available. | National Library of MedicineGovernment research agency | People with NF · Families & caregivers · Researchers | Study registry | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Clinical Drug PipelineBrowse an NF-focused view of treatment development and active clinical research with links to official study records. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Researchers | Interactive directory | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Discovery LabExplore connected publications, funded projects, registered studies, and maintained research sources by topic. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Researchers · General learning | Interactive research tool | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Review or question this sourceCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF StorylinesBuild a guided pathway through connected NF explanations, research, care, advocacy, glossary terms, and milestones. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource |
Preparing for Appointments19 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Challenges in the Transition from Pediatric to Adult NF CareReview documented transition barriers, unmet needs, and priorities for improving the move into adult NF care. | NF1 transition roundtable contributorsClinical and patient collaboration | Young adults · Families & caregivers · Professionals | White paper | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Find an NF ClinicSearch and compare NF clinics and specialist programs by location, age group, condition, and care type. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Directory | Open resource | |
| Find an NF Clinic Network providerSearch recognized NF clinics in the United States and Canada and confirm current program details directly. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Directory | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Find an NF doctorBrowse an additional NF clinic and doctor directory with program and contact information. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers | Directory | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: LZTR1- and SMARCB1-Related SchwannomatosisUse an expert reference for other schwannomatosis types, including diagnosis, pain, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: Neurofibromatosis 1Use an expert clinical reference covering NF1 diagnosis, manifestations, surveillance, management, and genetic counseling. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| GeneReviews: NF2-Related SchwannomatosisUse an expert clinical reference covering diagnosis, manifestations, surveillance, management, and genetics. | NCBI BookshelfGovernment research library | Professionals · Researchers · People with NF | Clinical reference | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Guide for Transitioning to Adult CareReview NF1-PN transition considerations for patients and caregivers preparing to move from pediatric to adult care. | NF CollectiveNF organization | Young adults · Families & caregivers | PDF guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| Guide to Genetic Testing in NF and SchwannomatosisUnderstand why genetic testing may be considered, what the process involves, and what results may or may not explain. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Appointment ToolkitUse a complete appointment toolkit with reminders, a health summary, symptom and question preparation, and follow-up planning. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF toolkit | Open resource | |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Prepare questions for careCopy a cautious starting prompt or open the related Hub tool. | Visit original |
| NF symptom and follow-up trackerDocument changes, effects on daily life, questions, follow-up responsibilities, and next steps. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF | Open resource | |
| One-page NF health summaryOrganize diagnosis, manifestations, monitoring, treatments, medications, imaging, and care-team contacts for a new provider. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Pediatric-to-adult care transition checklistPrepare records, responsibilities, referrals, prescriptions, and the handoff from pediatric to adult NF care. | LIC NF HubCreated for this Hub | Young adults · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Preparing What to SayBuild clearer questions, requests, follow-ups, summaries, and messages while controlling what personal information is shared. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Interactive tool | Open resource |
Medical Records4 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| NF Appointment ToolkitUse a complete appointment toolkit with reminders, a health summary, symptom and question preparation, and follow-up planning. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF toolkit | Open resource | |
| NF symptom and follow-up trackerDocument changes, effects on daily life, questions, follow-up responsibilities, and next steps. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF | Open resource | |
| One-page NF health summaryOrganize diagnosis, manifestations, monitoring, treatments, medications, imaging, and care-team contacts for a new provider. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Pediatric-to-adult care transition checklistPrepare records, responsibilities, referrals, prescriptions, and the handoff from pediatric to adult NF care. | LIC NF HubCreated for this Hub | Young adults · Families & caregivers · Professionals | Fillable PDF | Open resource |
Community & Support55 topic placements
Connecting With Others5 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Visit original | |
| NF Groups and CommunitiesBrowse established NF groups, official communities, and peer-support spaces across major platforms. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Directory | Open resource | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Visit original | |
| NF Organizations DirectorySearch nonprofit organizations, companies advancing NF care, and businesses supporting the NF community. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Directory | Open resource | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Visit original |
Family / Caregivers35 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Appealing a health-plan decisionReview federal starting information about internal appeals and external review; follow the deadlines and instructions in the actual plan notice. | HealthCare.govGovernment health agency | People with NF · Families & caregivers | Web guide | Visit original | |
| Challenges in the Transition from Pediatric to Adult NF CareReview documented transition barriers, unmet needs, and priorities for improving the move into adult NF care. | NF1 transition roundtable contributorsClinical and patient collaboration | Young adults · Families & caregivers · Professionals | White paper | Visit original | |
| ClinicalTrials.gov NF study searchSearch registered NF and schwannomatosis studies, eligibility, locations, recruitment, and posted results when available. | National Library of MedicineGovernment research agency | People with NF · Families & caregivers · Researchers | Study registry | Visit original | |
| Explore the NF BodyExplore NF by body system, symptom, and whole-person concern, then connect each topic with questions and research. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| Find an NF ClinicSearch and compare NF clinics and specialist programs by location, age group, condition, and care type. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Directory | Open resource | |
| Find an NF Clinic Network providerSearch recognized NF clinics in the United States and Canada and confirm current program details directly. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Directory | Visit original | |
| Find an NF doctorBrowse an additional NF clinic and doctor directory with program and contact information. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers | Directory | Visit original | |
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Visit original | |
| Glossary+Search layered plain-language definitions covering NF, care, research, insurance, work, school, and advocacy. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals · General learning | Searchable guide | Open resource | |
| Guide for Transitioning to Adult CareReview NF1-PN transition considerations for patients and caregivers preparing to move from pediatric to adult care. | NF CollectiveNF organization | Young adults · Families & caregivers | PDF guide | Visit original | |
| Guide to Genetic Testing in NF and SchwannomatosisUnderstand why genetic testing may be considered, what the process involves, and what results may or may not explain. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers | Guide | Visit original | |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| MedlinePlus: NeurofibromatosisStart with patient-friendly NF information and selected links to genetics, diagnosis, treatment, and research. | National Library of MedicineGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Visit original | |
| Neurofibromatosis overviewReview a federal overview of NF types, symptoms, diagnosis, treatment, prognosis, and research. | National Institute of Neurological Disorders and StrokeGovernment health agency | People with NF · Families & caregivers · General learning | Web guide | Visit original | |
| NF Appointment ToolkitUse a complete appointment toolkit with reminders, a health summary, symptom and question preparation, and follow-up planning. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF toolkit | Open resource | |
| NF Clinical Drug PipelineBrowse an NF-focused view of treatment development and active clinical research with links to official study records. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Researchers | Interactive directory | Visit original | |
| NF Discovery LabExplore connected publications, funded projects, registered studies, and maintained research sources by topic. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Researchers · General learning | Interactive research tool | Open resource | |
| NF drug-study question guidePrepare questions about evidence, eligibility, risks, costs, privacy, outcomes, rights, and post-study access. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | PDF guide | Open resource | |
| NF Educational MaterialsBrowse educational books, brochures, care information, children’s materials, and other NF learning resources. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource collection | Visit original | |
| NF Groups and CommunitiesBrowse established NF groups, official communities, and peer-support spaces across major platforms. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Directory | Open resource | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Visit original | |
| NF Organizations DirectorySearch nonprofit organizations, companies advancing NF care, and businesses supporting the NF community. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Directory | Open resource | |
| NF Parent GuidebookA detailed guidebook for parents and caregivers of children living with NF1. | Children’s Tumor FoundationNF organization | Families & caregivers · Children & teens | PDF guidebook | Visit original | |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Visit original | |
| NF StorylinesBuild a guided pathway through connected NF explanations, research, care, advocacy, glossary terms, and milestones. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Interactive tool | Open resource | |
| NF symptom and follow-up trackerDocument changes, effects on daily life, questions, follow-up responsibilities, and next steps. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers | Fillable PDF | Open resource | |
| NF1 information and resourcesReview NF1 information and downloadable materials about diagnosis, manifestations, genetics, and related concerns. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · General learning | Web guide and downloads | Visit original | |
| NORD RareCare patient assistanceExplore assistance programs for medication access, diagnostics, caregiver support, insurance costs, and other needs; eligibility varies. | National Organization for Rare DisordersRare-disease organization | People with NF · Families & caregivers | Assistance program directory | Visit original | |
| One-page NF health summaryOrganize diagnosis, manifestations, monitoring, treatments, medications, imaging, and care-team contacts for a new provider. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Patient Advocate FoundationFind case-management and financial-aid information for eligible patients facing insurance, access, employment, debt, or cost barriers. | Patient Advocate FoundationPatient-advocacy nonprofit | People with NF · Families & caregivers | Support and assistance programs | Visit original | |
| Pediatric-to-adult care transition checklistPrepare records, responsibilities, referrals, prescriptions, and the handoff from pediatric to adult NF care. | LIC NF HubCreated for this Hub | Young adults · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Preparing What to SayBuild clearer questions, requests, follow-ups, summaries, and messages while controlling what personal information is shared. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Interactive tool | Open resource | |
| Six Core Elements of Health Care TransitionUse a widely adopted framework and tools for planning, transferring, and confirming the move from pediatric to adult healthcare. | Got TransitionProfessional healthcare initiative | Young adults · Families & caregivers · Professionals | Framework and tools | Visit original | |
| Test Your NF KnowledgeTake a rotating 20-question NF knowledge challenge with difficulty choices, explanations, and maintained sources. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive learning tool | Open resource |
Young Adults10 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Challenges in the Transition from Pediatric to Adult NF CareReview documented transition barriers, unmet needs, and priorities for improving the move into adult NF care. | NF1 transition roundtable contributorsClinical and patient collaboration | Young adults · Families & caregivers · Professionals | White paper | Visit original | |
| Guide for Transitioning to Adult CareReview NF1-PN transition considerations for patients and caregivers preparing to move from pediatric to adult care. | NF CollectiveNF organization | Young adults · Families & caregivers | PDF guide | Visit original | |
| Job Accommodation NetworkExplore workplace accommodation ideas and educational guidance about the interactive accommodation process. | U.S. Department of Labor-funded serviceProfessional support service | People with NF · Young adults · Professionals | Information and consultation service | Visit original | |
| Know Your RightsFind educational starting points for workplace, school, insurance, benefits, accommodations, and access concerns. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Web guide | Open resource | |
| NF Groups and CommunitiesBrowse established NF groups, official communities, and peer-support spaces across major platforms. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Directory | Open resource | |
| NF Practice ScenariosPractice realistic communication, care, research, transition, accommodation, and access decisions through guided situations. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive practice tool | Open resource | |
| Pediatric-to-adult care transition checklistPrepare records, responsibilities, referrals, prescriptions, and the handoff from pediatric to adult NF care. | LIC NF HubCreated for this Hub | Young adults · Families & caregivers · Professionals | Fillable PDF | Open resource | |
| Preparing What to SayBuild clearer questions, requests, follow-ups, summaries, and messages while controlling what personal information is shared. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Interactive tool | Open resource | |
| Six Core Elements of Health Care TransitionUse a widely adopted framework and tools for planning, transferring, and confirming the move from pediatric to adult healthcare. | Got TransitionProfessional healthcare initiative | Young adults · Families & caregivers · Professionals | Framework and tools | Visit original | |
| Test Your NF KnowledgeTake a rotating 20-question NF knowledge challenge with difficulty choices, explanations, and maintained sources. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults · General learning | Interactive learning tool | Open resource |
Support Programs5 resources
| Best for | Use this on the Hub | Open resource | |||
|---|---|---|---|---|---|
| Genetic and Rare Diseases Information CenterFind rare-disease information and help locating organizations, research, financial support, and other resources. | National Center for Advancing Translational SciencesGovernment health agency | People with NF · Families & caregivers · General learning | Information center | Visit original | |
| NF Groups and CommunitiesBrowse established NF groups, official communities, and peer-support spaces across major platforms. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · Young adults | Directory | Open resource | |
| NF Network WebinarsWatch educational webinars about medical care, research, daily living, support, and NF community topics. | Neurofibromatosis NetworkNF organization | People with NF · Families & caregivers · General learning | Video and webinar library | Visit original | |
| NF Organizations DirectorySearch nonprofit organizations, companies advancing NF care, and businesses supporting the NF community. | LIC NF HubCreated for this Hub | People with NF · Families & caregivers · General learning | Directory | Open resource | |
| NF Resource LibrarySearch NF fact sheets, diagnosis booklets, children’s resources, genetics guidance, videos, and multilingual materials. | Children’s Tumor FoundationNF organization | People with NF · Families & caregivers · Children & teens · General learning | Resource library | Visit original |
A resource may appear in several topic groups without being duplicated in the collection. Linked organizations control their own content, availability, language options, eligibility rules, and updates.