Organizations
Find NF organizations moving research, care, and community forward.
Explore charities, nonprofits, patient organizations, collaborative networks, and companies contributing to NF research and treatment development.
Organizations, research & community support
Organization directory
Search nonprofits, research and medical groups, and businesses supporting the NF community without leaving this directory.
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Nonprofit organizations by country or region (33)
Canada, United Kingdom, Ireland & Australia3 organizations
Childhood Tumour TrustCanada, United Kingdom, Ireland & AustraliaNF1Supports children and young people with NF1 and their families across the United Kingdom with practical information and community connection.View links
Supports children and young people with NF1 and their families across the United Kingdom with practical information and community connection.
Children’s Tumour Foundation AustraliaCanada, United Kingdom, Ireland & AustraliaNF1 · NF2-related schwannomatosis · Other schwannomatosesAustralia’s national NF patient advocacy and support organization for children, adults, and families.View links
Australia’s national NF patient advocacy and support organization for children, adults, and families.
Tumour Foundation of BCCanada, United Kingdom, Ireland & AustraliaNF1 · NF2-related schwannomatosis · Other schwannomatosesSupports people in British Columbia affected by NF through information, family connection, advocacy, and community programs.View links
Supports people in British Columbia affected by NF through information, family connection, advocacy, and community programs.
Continental Europe8 organizations
APNF (Portugal)Continental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesPortuguese NF association supporting patients and families through information, awareness, advocacy, and community activities.View links
Portuguese NF association supporting patients and families through information, awareness, advocacy, and community activities.
Association Neurofibromatoses et Recklinghausen (France)Continental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesFrench patient association offering information, support, awareness, and advocacy for people affected by NF.View links
French patient association offering information, support, awareness, and advocacy for people affected by NF.
Bundesverband Neurofibromatose (Germany)Continental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesGerman national NF organization advancing patient support, education, advocacy, and research awareness.View links
German national NF organization advancing patient support, education, advocacy, and research awareness.
Neurofibromatose Vereniging NederlandContinental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesDutch patient association providing NF information, peer connection, advocacy, and support.View links
Dutch patient association providing NF information, peer connection, advocacy, and support.
Neuroförbundet (Sweden)Continental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesSwedish neurological patient organization offering information, advocacy, and community resources that include people affected by NF.View links
Swedish neurological patient organization offering information, advocacy, and community resources that include people affected by NF.
NF DanmarkContinental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesDanish NF community organization sharing information, peer support, activities, and advocacy resources.View links
Danish NF community organization sharing information, peer support, activities, and advocacy resources.
NF Kinder (Austria)Continental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesSupports children and families affected by NF in Austria while promoting awareness, care, and research.View links
Supports children and families affected by NF in Austria while promoting awareness, care, and research.
NF NorgeContinental EuropeNF1 · NF2-related schwannomatosis · Other schwannomatosesNorwegian NF organization connecting patients and families through information, peer support, events, and advocacy.View links
Norwegian NF organization connecting patients and families through information, peer support, events, and advocacy.
International networks3 organizations
Children’s Tumor Foundation EuropeInternational networksNF1 · NF2-related schwannomatosis · Other schwannomatosesSupports European collaboration in NF research, clinical care, advocacy, and patient engagement.View links
Supports European collaboration in NF research, clinical care, advocacy, and patient engagement.
Cure NF2 FoundationInternational networksNF2-related schwannomatosisFunds research into potential gene, cell, and immunotherapy approaches and connects families affected by NF2-related schwannomatosis.View links
NF CollectiveInternational networksNF1 · NF2-related schwannomatosis · Other schwannomatosesConnects U.S. NF nonprofits and resource partners to strengthen collaboration, awareness, and community support.View links
Connects U.S. NF nonprofits and resource partners to strengthen collaboration, awareness, and community support.
Latin America, Asia & Africa3 organizations
AMANF (Brazil)Latin America, Asia & AfricaNF1 · NF2-related schwannomatosis · Other schwannomatosesBrazilian NF association providing patient education, support, professional information, and advocacy.View links
Brazilian NF association providing patient education, support, professional information, and advocacy.
NF Cure JapanLatin America, Asia & AfricaNF1 · NF2-related schwannomatosis · Other schwannomatosesRaises NF awareness and supports the Japanese NF community while encouraging research and better treatment options.View links
Raises NF awareness and supports the Japanese NF community while encouraging research and better treatment options.
Rare Diseases South AfricaLatin America, Asia & AfricaNF1 · NF2-related schwannomatosis · Other schwannomatosesAdvocates for people with rare diseases, including improved diagnosis, access to care, policy, and patient support.View links
Advocates for people with rare diseases, including improved diagnosis, access to care, policy, and patient support.
United States16 organizations
Acoustic Neuroma AssociationUnited StatesNF2-related schwannomatosisProvides education, support, provider information, and research resources about vestibular schwannomas, including concerns relevant to NF2-related schwannomatosis.View links
Provides education, support, provider information, and research resources about vestibular schwannomas, including concerns relevant to NF2-related schwannomatosis.
B the DifferenceUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesSupports individuals and families affected by NF through programs that provide meaningful experiences, kindness, and practical community support.View links
Littlest Tumor FoundationUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesSupports children with NF and their families through education, advocacy, community programs, and research-focused initiatives.View links
Supports children with NF and their families through education, advocacy, community programs, and research-focused initiatives.
Neurofibromatosis Empowerment in Detroit (NFX)United StatesNF1Funds high-impact scientific and medical research focused on targeted treatments for NF1 and leads NF awareness and fundraising initiatives.View links
Neurofibromatosis Family Association at CHOPUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesConnects families associated with Children’s Hospital of Philadelphia to NF support, education, and community resources.View links
Connects families associated with Children’s Hospital of Philadelphia to NF support, education, and community resources.
NF CaliforniaUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesConnects Californians affected by NF with regional information, community support, events, and NF Network resources.View links
Connects Californians affected by NF with regional information, community support, events, and NF Network resources.
NF Central PlainsUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesServes individuals and families in the central Plains through NF education, support, awareness, and community connection.View links
Serves individuals and families in the central Plains through NF education, support, awareness, and community connection.
NF MichiganUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesOffers education, NF specialist information, peer connection, events, advocacy, scholarships, and practical support through MiNF Cares for people and families across Michigan.View links
Offers education, NF specialist information, peer connection, events, advocacy, scholarships, and practical support through MiNF Cares for people and families across Michigan.
NF MidwestUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesSupports children, adults, and families through education, community programs, clinic development, and NF research.View links
NF North CentralUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesBuilds regional connection and shares support, education, and community information for people affected by NF.View links
Builds regional connection and shares support, education, and community information for people affected by NF.
NF NortheastUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesProvides support, education, advocacy, community programs, and research funding for people and families across the northeastern United States.View links
NF SimplifiedUnited StatesOther schwannomatosesMakes NF and schwannomatosis research easier to understand through clear, expert-reviewed summaries for patients, families, and caregivers.View links
Makes NF and schwannomatosis research easier to understand through clear, expert-reviewed summaries for patients, families, and caregivers.
NF TennesseeUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesProvides NF awareness, education, family support, and community opportunities for people across Tennessee.View links
Provides NF awareness, education, family support, and community opportunities for people across Tennessee.
Penny’s Flight FoundationUnited StatesNF1Funds NF1 research, expands NF awareness through school and community campaigns, and supports adaptive programs for children and teens with disabilities.View links
Texas Neurofibromatosis FoundationUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesProvides education, referrals, family support, and advocacy while helping advance NF research in Texas and beyond.View links
Provides education, referrals, family support, and advocacy while helping advance NF research in Texas and beyond.
The NF TeamUnited StatesNF1 · NF2-related schwannomatosis · Other schwannomatosesBrings people together through athletic and community fundraising efforts that increase NF awareness and support research.View links
Companies advancing NF care, research, and treatment (22)
Alexion, AstraZeneca Rare DiseaseNF1 · Plexiform neurofibromasApproved NF treatmentView details
Develops and provides Koselugo (selumetinib), an approved MEK-inhibitor treatment for eligible people with NF1-associated plexiform neurofibromas, while continuing NF research and patient-support work.
Ambry GeneticsNF1 · NF2-related schwannomatosis · Other schwannomatosesGenetic testing and diagnosticsView details
Provides clinical genetic testing and variant analysis for NF1 and schwannomatosis-related genes to support diagnosis and care planning.
CureAge TherapeuticsNF1 · Underlying disease biologyPreclinical genetic medicineView details
A CTF- and Deep Science Ventures-founded biotechnology company developing genetic medicines intended to reach Schwann cells and address the underlying biology of NF1.
GeneDxNF1 · NF2-related schwannomatosis · Other schwannomatosesGenetic testing and diagnosticsView details
Provides molecular genetic testing and variant interpretation that can help identify NF1 and schwannomatosis-related genetic changes.
GondolaBioNF1 · Undisclosed programDiscovery researchView details
Lists an NF1 therapeutic program in its genetic-disease pipeline. The candidate and specific NF1 manifestation have not yet been publicly disclosed.
HealxNF1 · Plexiform neurofibromasClinical development · Phase 2View details
Uses an AI-supported drug-discovery platform to develop HLX-1502 and is studying the candidate in the INSPIRE-NF1 clinical trial.
IncyteNF2-related schwannomatosisClinical researchView details
Provided a compound for a CTF-supported combination-treatment arm within the INTUITT-NF2 platform trial.
iNFixion BioscienceNF1 · Neurofibromin restorationPreclinical drug discoveryView details
Develops mutation-agnostic approaches intended to increase functional neurofibromin and address the root biological driver of NF1.
Labcorp / InvitaeNF1 · NF2-related schwannomatosis · Other schwannomatosesGenetic testing and diagnosticsView details
Offers hereditary nervous-system tumor testing that includes NF1 and schwannomatosis-related genes, along with clinical interpretation services.
Merck KGaA / SpringWorks TherapeuticsNF1 · Plexiform neurofibromasApproved NF treatmentView details
Developed Gomekli/Ezmekly (mirdametinib), an approved MEK-inhibitor treatment for eligible adults and children with NF1-associated plexiform neurofibromas.
Merlin TherapeuticsNF2-related schwannomatosis · SchwannomasPreclinical gene therapyView details
Develops MRL-102, a gene-replacement approach intended to restore functional merlin in schwannomas.
Mulberry BiotherapeuticsNF2-related schwannomatosisPreclinical · Approaching clinical studyView details
Develops MUL001, an investigational bacteria-mediated immunotherapy delivered directly into tumors, initially for NF2-related schwannomatosis.
NF2 Therapeutics, Inc.NF2-related schwannomatosisEarly-stage therapeutic researchView details
An NF2-focused company developing an AAV gene therapy for vestibular schwannomas and an antibody-drug conjugate for meningiomas.
NFlection TherapeuticsNF1 · Cutaneous neurofibromasClinical developmentView details
Develops NFX-179, an investigational topical MEK-inhibitor gel studied for cutaneous neurofibromas in NF1.
NovartisNF1 · Tumor manifestationsNF-related clinical researchView details
Its MEK inhibitor trametinib has been studied in investigator-led NF1 research, including plexiform neurofibromas and low-grade gliomas.
Pasithea TherapeuticsNF1 · RAS/MAPK-driven tumorsEarly clinical developmentView details
Is evaluating PAS-004, an investigational MEK inhibitor with potential relevance to NF1-associated tumors.
PfizerNF1 · Mirdametinib originsDrug-development contributorView details
Originated the mirdametinib program and helped establish SpringWorks Therapeutics, supporting the path that ultimately produced an approved NF1 treatment.
PreventionGenetics, part of Exact SciencesNF1 · NF2-related schwannomatosis · Other schwannomatosesGenetic testing and diagnosticsView details
Provides clinical genetic testing for NF1 and schwannomatosis-related genes, including single-gene and multigene testing options.
PRG Science & TechnologyNF2-related schwannomatosisEarly clinical developmentView details
Develops PRG-N-01 (trineumin), an investigational therapy intended to increase tumor-suppressor activity in NF2-related schwannomatosis.
Santo TherapeuticsNF2-related schwannomatosisEarly clinical gene therapyView details
Develops ST002, an investigational in-vivo gene therapy designed to restore NF2/merlin function in NF2 mutation-driven tumors.
Takeda Pharmaceutical CompanyNF2-related schwannomatosisClinical research · Drug repurposingView details
Partnered with CTF on the INTUITT-NF2 platform trial studying brigatinib and other potential treatments for NF2-related schwannomatosis.
Vivace TherapeuticsNF2-altered tumors · Hippo pathwayNF-related clinical researchView details
Develops therapies targeting the Hippo pathway, including clinical research in tumors with NF2 alterations. This work is broader than inherited NF2-related schwannomatosis.
Businesses supporting the NF community (7)
Colbeck Capital ManagementAn investment management firm.Provides recurring sponsorship for NF patient programs, awareness initiatives, and fundraising events.Children’s Tumor FoundationView details
NF organization or beneficiary: Children’s Tumor Foundation
FourthIdeaA branding, marketing, and creative services agency.Has supported NF Northeast for many years, including donated branding and marketing services.NF NortheastView details
NF organization or beneficiary: NF Northeast
iGiveAn online shopping platform that helps shoppers generate donations for participating causes.Allows shoppers to select NF Network so participating retailers contribute a portion of eligible purchases.NF NetworkView details
NF organization or beneficiary: NF Network
Olivia’s OrganicsAn organic produce brand that also uses its packaging and marketing to highlight community causes.Has repeatedly featured NF Northeast on product packaging to raise awareness of NF and the organization’s work.NF NortheastView details
NF organization or beneficiary: NF Northeast
One LotteryA fundraising lottery platform that supports participating community organizations.Provides a dedicated lottery page through which ticket purchases generate recurring funding for NF support services.Nerve Tumours UKView details
NF organization or beneficiary: Nerve Tumours UK
Tiny Dog Leather StudioA small business creating handmade leather goods for dogs and their people.Commits a portion of proceeds to Jake’s NF-related medical care while raising awareness of NF.NF-related medical care and NF awarenessView details
NF organization or beneficiary: NF-related medical care and NF awareness
Trish Mahoney-Diefenbach / Eryn’s AngelsA real-estate professional whose work includes a charitable giving commitment.Pledges 10% of real-estate commissions to NF Northeast in memory of Eryn.NF NortheastView details
NF organization or beneficiary: NF Northeast
Progress across generations
Community Milestones Timeline
A selective, source-linked history of discoveries, care, organizations, advocacy, shared research resources, and treatment progress across the NF community.
Open any row for the concise history, why it mattered, and its verified source. “Then & Now” appears only when it adds useful context.
View 19 community milestones
- Clinical historyNF1 receives an early clinical description
What happened
Friedrich Daniel von Recklinghausen published a detailed description connecting characteristic tumors with nerves.
Why it mattered
The description helped establish NF as a recognizable clinical condition and shaped the language used for generations.
PubMed historical reviewTHENNF was understood mainly through visible signs, symptoms, and clinical observation.
NOWDefined diagnostic criteria, imaging, surveillance guidance, and genetic testing can support more precise diagnosis and care.
- Community organizationChildren’s Tumor Foundation is founded
What happened
CTF began as a grassroots organization dedicated to finding treatments for NF and supporting affected families.
Why it mattered
It created a major coordinated platform for NF research, clinical education, advocacy, and community participation.
Children’s Tumor FoundationTHENFamilies and researchers had fewer coordinated NF-specific networks and shared resources.
NOWCTF supports research programs, an NF Clinic Network, the NF Registry, education, and international collaboration.
- Care programThe Neurofibromatosis Institute and an NF clinic are established
What happened
Dr. Vincent Riccardi founded The Neurofibromatosis Institute and established a specialized clinic for patient care.
NF MidwestWhy it mattered
Dedicated NF programs helped connect clinical experience, patient support, and research in a field with limited specialized care.
- Community organizationNF Midwest is founded
What happened
NF Midwest was founded to serve children, adults, and families affected by NF across the Midwestern United States.
NF MidwestWhy it mattered
The organization expanded regional access to NF education, support, clinic relationships, awareness, and research advocacy.
- Research discoveryThe NF1 gene is mapped to chromosome 17
What happened
Genetic mapping narrowed the location of the NF1 gene and accelerated the work that followed.
Why it mattered
Mapping gave researchers a defined genomic region to investigate and helped make gene identification possible.
PubMedTHENThe cause of NF1 was unknown at the molecular level.
NOWNF1 is understood as a tumor-suppressor gene on chromosome 17, informing testing, counseling, research, and treatment development.
- Advocacy organizationNF Network is founded
What happened
NF Network was founded as a national organization advocating for federal NF research funding and the development of local organizations.
NF NetworkWhy it mattered
It strengthened coordinated public-policy advocacy, education, awareness, and community-building across the United States.
- Community organizationNF Northeast is incorporated
What happened
NF, Inc. Mass Bay Area—now NF Northeast—was incorporated and later expanded its regional identity and reach.
NF NortheastWhy it mattered
The organization built continuing patient programs, education, advocacy, and an NF research-funding program that began in 1990.
- Research discoveryThe NF1 gene is identified
What happened
Independent research teams identified the NF1 gene and its role in the condition.
Why it mattered
Gene identification opened new paths for genetic testing, biological research, and therapies aimed at affected signaling pathways.
PubMedTHENResearchers knew the chromosome region but had not identified the gene itself.
NOWResearchers study neurofibromin and the RAS/MAPK pathway to understand NF1 biology and develop potential treatments.
- Research discoveryThe NF2 gene is identified
What happened
Researchers identified the NF2 gene on chromosome 22 and the protein now known as merlin.
Why it mattered
The discovery strengthened molecular diagnosis and research into tumors associated with NF2-related schwannomatosis.
PubMedTHENThe molecular cause associated with the condition then called NF2 was not known.
NOWNF2 and merlin biology guide research, genetic testing, and the gene-based classification of NF2-related schwannomatosis.
- Clinical-care networkThe NF Clinic Network is established
What happened
Children’s Tumor Foundation established a network of specialized NF clinics in the United States.
Why it mattered
The network gave more patients a route to experienced multidisciplinary care while supporting clinical collaboration and better practices.
Children’s Tumor FoundationTHENSpecialized NF care was harder to identify and less formally connected across institutions.
NOWThe network includes more than 70 clinics across North America and serves more than 20,000 patient visits annually.
- Research collaborationREiNS collaboration is established
What happened
The Response Evaluation in Neurofibromatosis and Schwannomatosis collaboration formed to develop shared clinical-trial response criteria and endpoints.
Children’s Tumor Foundation research toolsWhy it mattered
Common measurement standards help researchers compare trial results and design stronger NF studies.
- Patient-powered researchThe NF Registry launches
What happened
Children’s Tumor Foundation established the NF Registry as a global platform for people with NF to contribute health and lived-experience information.
Why it mattered
Registry participation supports natural-history research, study recruitment, care planning, and therapy development.
Children’s Tumor FoundationTHENResearchers had fewer scalable ways to learn directly from large numbers of people living with NF.
NOWThe Registry supports global participation and connects patient-reported information with research opportunities.
- Research collaborationSynodos for NF2 launches
What happened
CTF launched a collaborative research platform bringing multiple laboratories and medical centers together around NF2.
Children’s Tumor FoundationWhy it mattered
The shared-work model connected tumor models, molecular data, and drug testing to accelerate research beyond isolated projects.
- Research collaborationSynodos for Schwannomatosis launches
What happened
An international multidisciplinary consortium launched to study schwannomatosis tumors, therapeutic targets, management, and pain.
Children’s Tumor FoundationWhy it mattered
The project gave schwannomatosis a dedicated collaborative research effort focused on questions important to patients.
- Open research resourceThe NF Data Portal launches
What happened
CTF, NTAP, and Sage Bionetworks launched the NF Data Portal to make molecular and clinical data from NF studies available to researchers.
Children’s Tumor Foundation research archiveWhy it mattered
Shared data and linked research resources make findings easier to reuse, compare, and build upon.
- Treatment approvalFirst FDA-approved treatment for NF1 plexiform neurofibromas
What happened
The FDA approved selumetinib for certain children with NF1 and symptomatic, inoperable plexiform neurofibromas.
Why it mattered
This was the first FDA-approved medicine specifically for an NF condition and marked a major change in the treatment landscape.
U.S. Food and Drug AdministrationTHENFor inoperable plexiform neurofibromas, options centered on monitoring, symptom management, and surgery when feasible.
NOWTargeted medicines are available for certain eligible patients, although they are not cures and do not fit every person or tumor.
- Diagnosis and terminologyInternational consensus updates schwannomatosis naming
What happened
Experts published revised diagnostic criteria and gene-based nomenclature, including the term NF2-related schwannomatosis.
Why it mattered
The update better reflects genetic causes and overlapping tumor patterns while improving precision in care and research.
PubMedTHENNF2 and schwannomatosis were classified using older categories that did not consistently reflect genetic causes.
NOWGene-based terms improve precision, while older names remain useful search terms and may appear in historical records.
- Treatment approvalMirdametinib is approved for NF1 plexiform neurofibromas
What happened
The FDA approved mirdametinib for adults and children age two and older with NF1 and symptomatic plexiform neurofibromas not amenable to complete resection.
Why it mattered
The approval added another targeted option and covered certain eligible adults as well as children.
U.S. Food and Drug AdministrationTHENThe first targeted approval in this setting applied to a narrower pediatric population.
NOWMore than one targeted option may be available for certain eligible patients, with treatment decisions made by an experienced care team.
- Treatment approvalSelumetinib indication expands to adults
What happened
The FDA expanded selumetinib’s indication to adults with NF1 and symptomatic, inoperable plexiform neurofibromas.
Why it mattered
The expanded indication made the established treatment available to another eligible age group.
U.S. Food and Drug AdministrationTHENSelumetinib’s NF1 plexiform-neurofibroma indication was limited to pediatric patients.
NOWCertain eligible adults can also be considered under the expanded indication, with individualized clinical guidance.
Organizations & community
Updates from selected NF organizations
These are organization posts—not additional scientific evidence. Verify research claims against the original publication or official study record.
Automatically collected only from selected organizations that provide a usable public NF feed. Organization posts are not the same as peer-reviewed studies or official clinical-trial results.