Lasting Impressions Coffee NF Research & Advocacy HubSocial media
Share responsibly. Verify before you amplify.
Social media can build community quickly—but personal experience, medical guidance, and research evidence are not interchangeable.
Review misinformation guidance ↗Before you post or repost
- ✓Can you trace the claim to an original, credible source?
- ✓Is the evidence human, animal, laboratory, or opinion?
- ✓Does the post separate personal experience from medical advice?
- ✓Are limitations, uncertainty, and conflicts of interest visible?
- ✓Could the wording pressure someone to change treatment without a clinician?
Places to connect
Social Media Groups
Independent communities, peer-support spaces, and organization-run groups across major social platforms. Official nonprofit profile pages are listed with their organization in the Nonprofit Organizations directory. Review each group’s rules, privacy settings, and moderation practices before participating; inclusion is informational and does not endorse every post or viewpoint.
24 of 24 groups and community resources
Each community appears once; expand a row to see every available destination.
View 24 groups and community resources+
Bay Area NF Support Group at StanfordAll NF conditionsFamilies of children and teensClinic-supported family groupUnited States — Bay AreaView links ⌄
A group supported by Lucile Packard Children’s Hospital for parents, grandparents, friends, and families of children and teens with NF.
Can You Hear Us? / NF2 and YouNF2-related schwannomatosisPatients, families, and caregiversPatient-led community and mediaUnited Kingdom / GlobalView links ⌄
An NF2-focused community project offering connection, patient and family resources, and the NF2 and You video-podcast series.
Faces of NeurofibromatosisAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Large peer community where people share NF experiences, questions, resources and personal stories.
Henry Ford Neurofibromatosis Support GroupNF1 and NF2-related schwannomatosisPatients and care partnersHybrid support groupUnited States — Michigan / VirtualView links ⌄
A free, recurring in-person and virtual support group with peer connection, questions, and presentations from medical experts.
Living with NeurofibromatosisAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
NF awareness, personal experiences and community-focused content.
Nerve Tumours UK CommunityAll NF conditionsPatients, families, teens, and studentsOrganization-run communitiesUnited KingdomView links ⌄
NF communities that include general support plus dedicated spaces for teens ages 13–18 and students.
Neurofibromatosis CommunityAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Community discussion and peer support for people and families affected by NF.
Neurofibromatosis Family Association (NFFA)All NF conditionsCHOP patients and familiesClinic-affiliated family associationUnited States — PhiladelphiaView links ⌄
A parent-volunteer association supporting individuals and families affected by NF through CHOP.
Neurofibromatosis Support CommunityAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Peer discussion, shared experiences and support related to Neurofibromatosis.
Neurofibromatosis Support GroupAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
General NF peer support and community discussion.
NF (Neurofibromatosis) Professionals NetworkAll NF conditionsProfessionals and advocatesPeer support / communityGlobal / OnlineView links ⌄
Professional networking, advocacy, research information and NF community discussion.
NF California Virtual Meet-UpAll NF conditionsPatients, families, and caregiversVirtual peer meet-upUnited States / VirtualView links ⌄
A recurring virtual gathering for people and families affected by NF.
NF Community DiscordAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Real-time conversation and peer connection for people affected by NF.
Maintenance note: Current password: HcksqnexGx
NF Midwest NF2ACTNF2-related schwannomatosisPeople with direct NF2-SWN experienceAction and community groupUnited States / GlobalView links ⌄
An action-oriented group for people with direct experience of NF2-related schwannomatosis.
NF Midwest Private CommunityAll NF conditionsPatients, families, and caregiversPrivate peer communityUnited States — MidwestView links ⌄
A private community for people affected by NF to connect with one another.
NF Moms Rock!!!!!All NF conditionsParents and caregiversPeer support / communityGlobal / OnlineView links ⌄
Private peer-support community for mothers and other parents of children affected by NF.
NF Network Inspire Support CommunityAll NF conditionsPatients, families, and caregiversOnline peer communityUnited States / GlobalView links ⌄
A large NF Network-hosted online support community for questions, experiences, and peer connection.
NF Northeast — Matched for HopeAll NF conditionsNewly diagnosed patients and familiesOne-to-one peer supportUnited States — NortheastView links ⌄
Pairs newly diagnosed patients and families with trained peers who understand NF1, NF2-SWN, or schwannomatosis.
NF1 Support & InformationNF1Patients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Private support and information group for young adults with NF1 ages 18 to 30 and families of people with NF1 up to age 30.
NF2 CrewNF2-related schwannomatosisPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Peer-support community for people affected by NF2-related schwannomatosis.
NF2 IS - NF Type 2 Information & ServicesNF2-related schwannomatosisPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Independent community sharing information, lived experiences and peer support related to NF2-related schwannomatosis.
NF2-SWN Patient UK NetworkNF2-related schwannomatosisPatients, families, and caregiversPeer support / communityUnited KingdomView links ⌄
UK-based peer community specifically for people living with NF2-related schwannomatosis.
r/neurofibromatosisAll NF conditionsPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Public discussion community for NF stories, questions, research, treatment experiences and emotional support.
Surviving Schwannomatosis Support GroupSchwannomatosisPatients, families, and caregiversPeer support / communityGlobal / OnlineView links ⌄
Peer-support community for people living with schwannomatosis and those who support them.
Community voices
iNFluencers
People using social media, storytelling, art, advocacy, and public platforms to make NF more visible. Inclusion is informational, not an endorsement of every post or viewpoint.
23 of 23 community voices
View 22 iNFluencers+
Adam PearsonNF1Patient / AdvocateSocial media, television, film and speakingView links ⌄
United Kingdom · Actor, presenter and disability campaigner addressing NF1, facial difference, ableism, bullying and representation.
Amit GhoseNF1Patient / AdvocateInstagram, TikTok, podcasts and public speakingView links ⌄
United Kingdom · Creates content about NF1, facial difference, confidence, bullying and self-acceptance. Nerve Tumours UK ambassador with a substantial public audience.
An NF Point of ViewNF2-SWNPatient / CreatorLived experience and rare-disease advocacyView links ⌄
United Kingdom · Angel shares the realities of NF2-related schwannomatosis, self-advocacy, isolation, treatment, and community connection.
Arooj Aftab - Vogue WondersNF1Patient / AdvocateInstagram, fashion content and bloggingView links ⌄
United Kingdom · Fashion and lifestyle creator who has discussed NF1, visible tumors, pain, confidence and the reasons behind her clothing choices.
Beth - Beth’s Bumpy JourneyNF1Patient / AdvocateYouTube, blogging and social mediaView links ⌄
United Kingdom · Rare-disease advocate and NF community creator sharing patient-centered stories, education and awareness content.
Decoding NFAll NF conditionsPodcaster / Community educatorInterviews, research, and living with NFView links ⌄
United States · A person-led podcast for people living with neurofibromatosis and the people who care for them.
Greta Brenken & Larissa Kaefer / SomehowdeafNF2-SWNPatients / AdvocatesDeafness, ABI, and NF2 educationView links ⌄
Germany · A German patient-led project sharing lived experience and accessible information about NF2-related schwannomatosis and deafness.
Jake LipeNF2-SWNPatient / Blogger / AdvocateLived experience, awareness, and research advocacyView links ⌄
United States · Jake writes candidly about living with NF2-related schwannomatosis and uses his story to promote awareness and research.
Leanna Scaglione - Running NF2NF2-related schwannomatosisPatient / AdvocateInstagram, TikTok, Facebook, endurance events and public speakingView links ⌄
United States · Deaf runner, NF2-SWN advocate, CTF’s 2025 National Ambassador and 2026-2028 Junior Board Co-Chair. Shares treatment experiences, recovery, hearing loss, running and NF Endurance activities.
McKinnon GallowayNF2-related schwannomatosisPatient / AdvocateWebsite, social media, Deaf District and public speakingView links ⌄
United States · Advocate, speaker and former CTF National Ambassador sharing experiences with tumors, treatment, deafness and disability while promoting accessibility for Deaf and hard-of-hearing communities.
Michael Archer / NF2.archNF2-SWNPatient / AdvocateTumors, balance, disability, and awarenessView links ⌄
United Kingdom · Michael documents life with NF2-related schwannomatosis, including brain and spinal tumors, balance, disability, and advocacy.
NF1 NavigatorNF1Clinician / AdvocateEducation and care navigationView links ⌄
United Kingdom · Dr. Sheelagh Harwell is a GP, researcher, educator, and advocate sharing practical NF1 information and navigation guidance.
Nicola / Sign With NicNF2-SWNPatient / Deaf creatorSign language, deafness, and lived experienceView links ⌄
United Kingdom · A patient and Deaf creator sharing sign-language content and perspectives connected to NF2-related schwannomatosis.
Oliver BromleyNF1Patient / AdvocateInstagram, blogging, podcasts and public speakingView links ⌄
United Kingdom · Writer, speaker and content creator discussing visible difference, discrimination, mental health, kindness and life with NF1.
Rachel Mindrup - Many Faces of NFNF mom and parent advocateParent advocate / ArtistVisual art, Instagram and storytellingView links ⌄
United States · NF mom and artist using portraits and patient stories to educate the public, support NF awareness and show the diversity of the NF community.
Reggie BibbsNFPatient / AdvocateSocial media, public appearances and traditional mediaView links ⌄
United States · Longstanding advocate behind the “Just Ask” message. Addresses visible difference, public reactions, acceptance and NF awareness.
Sarah PowlisonNF1Patient / AdvocateInstagram, LinkedIn and bloggingView links ⌄
United States · Focuses on making NF visible, supporting research, sharing her lived experience and connecting the global NF community.
Sonia Melendez / Book NeurofibromatosisAll NF conditionsFamily / Education advocateBilingual family education and awarenessView links ⌄
United States · Sonia creates English- and Spanish-language NF education and family-centered awareness content across several platforms.
Tracy / Styling With NFNF1Patient / CreatorLived experience, writing, and styleView links ⌄
United States · Tracy shares candid perspectives on living with NF1, grief, mobility, creativity, and self-expression.
Varshika Agarwal - Scarz and StoriesNFPatient / AdvocateInstagram and personal storytellingView links ⌄
India · Shares personal perspectives on visible difference, body image, difficult emotions and self-acceptance while living with NF.
Whitney ScheibelNF1Patient / Research advocateEducation, policy, and research advocacyView links ⌄
United States · Whitney uses short-form education, public speaking, Capitol Hill advocacy, and FDA listening sessions to make NF1 more visible and better understood.
Zoe - Chronically ZoeNF1Patient / AdvocateInstagramView links ⌄
United Kingdom · Publicly identifies as a Neurofibromatosis advocate and creates educational content intended to make the invisible visible.
Featured community voice
NextGen NF
NF community account powered by the Children’s Tumor Foundation Junior Board. Highlights patient outreach, young-adult voices, community events and efforts that support patients and families.
Visit NextGen NF ↗