NF Network — Neurofibromatosis Network

Resources

Support, Education & Connection

From one-on-one peer support to educational webinars and downloadable guides — the NF Network provides the resources you need at every stage of your NF journey.

Peer Support

NF Heartline

A one-on-one peer support program that connects individuals and families affected by neurofibromatosis with trained mentors who truly understand the journey.

Reach Out

Call or email the NF Heartline to let us know what you're looking for — whether it's a mentor, information, or just someone to talk to who gets it.

Get Matched

We pair you with a trained NF Heartline mentor whose experience aligns with your needs — from a new diagnosis to parenting a child with NF.

Stay Connected

Build an ongoing relationship with your mentor through regular calls, texts, or emails. There's no time limit — support is here for as long as you need it.

You Don't Have to Face NF Alone

Whether you're newly diagnosed, a parent, or a long-time patient, the NF Heartline connects you with someone who has walked a similar path. All mentors are trained and supported by the NF Network.

Learn

Webinars & Online Events

Join live webinars with NF experts, researchers, and community leaders — or watch past recordings on your own schedule.

Upcoming Webinars

Stay up to date with our calendar of live webinars. Topics range from NF research updates to practical tips for managing daily life with NF.

On-Demand Library

Browse our archive of recorded webinars. Catch up on presentations you missed or revisit talks on topics that matter most to you.

Expert Speakers

Learn from leading NF clinicians, researchers, and advocates. Our webinars feature the voices shaping the future of NF care and treatment.

Featured Webinar

Understanding Plexiform Neurofibromas: Latest Treatment Options

Dr. Sarah Chen discusses current and emerging treatments for plexiform neurofibromas, including MEK inhibitors and surgical approaches. Available on-demand.

Learn

Educational Materials

Downloadable brochures, fact sheets, and guides — designed for patients, families, educators, and healthcare providers.

NF Fact Sheets

Concise, printable overviews of NF1, NF2, and Schwannomatosis. Perfect for sharing with family, teachers, or new healthcare providers.

Patient Guides

In-depth guides covering diagnosis, treatment options, and living well with NF. Available in English and Spanish.

School & Educator Resources

Materials to help teachers, school nurses, and administrators understand NF and support students with the condition.

Clinical Trial Information

Learn about current NF clinical trials, what participation involves, and how to find studies that may be right for you or your loved one.

Advocacy Toolkits

Step-by-step guides for contacting elected officials, sharing your NF story, and becoming an effective advocate for the NF community.

Newsletter Archive

Browse past editions of the NF Network newsletter for community stories, research updates, and upcoming events.

Connect

Other Resources

Trusted organizations, partner resources, and external links to help you find the information and support you need.

Children's Tumor Foundation

A leading nonprofit dedicated to ending NF through research. Find clinical trial listings, patient resources, and research news.

NORD — Rare Disease Organization

The National Organization for Rare Disorders provides patient advocacy, financial assistance programs, and rare disease policy resources.

NIH — Neurofibromatosis

The National Institutes of Health offers comprehensive information on NF research, genetics, clinical studies, and treatment advances.

CDMRP — NF Research Program

The Congressionally Directed Medical Research Program funds innovative, high-impact NF research. Learn about funded projects and funding opportunities.

NF Clinics & Care Centers

Find an NF specialty clinic near you. These centers offer coordinated care from neurologists, geneticists, dermatologists, and more.

ClinicalTrials.gov — NF Studies

Search for actively recruiting NF clinical trials across the United States. Filter by location, trial phase, and eligibility criteria.

Help Us Provide These Resources

Every brochure, webinar, and Heartline call is made possible by supporters like you. Your donation keeps these vital resources free and accessible to the entire NF community.