NF Network Logo

Neurofibromatosis Network

Leading NF Advocacy
Building NF Community

Other Resources


Education - Neurofibromatosis

Antidote - Clinical Trials Search Tool

Medicine Assistance Tool ( - resources to help with prescriptions and more

Genetic Alliance

Genetics Home Reference - Neurofibromatosis type 1

Harvard Medical School Center - Understanding NF1

Johns Hopkins Hospital NF Center

Massachusetts General Hospital NF Clinic

National Cancer Institute

National Institutes of Health - Offices of Rare Disease Research

National Institute of Neurological Disorders & Stroke

National Library of Medicine - PubMed

National Organization for Rare Disorders (NORD)

The University of Chicago Neurofibromatosis Program

Washinton University Neurofibromatsis Center

Disease InfoSearch

The Mayo Clinic

KidsHealth - NF

CDMRP Department of Defense Neurofibromatosis Research Program

NCI Center for Cancer Research


Family & Financial Assistance


NORD Patient Assistance Programs

Medical Assistance Tool


Government & Disability Resources

Map Rx (Medicare Access for Patients Rx)

Potential income tax benefits for families with special needs children

Social Security Administration

Social Security Disability Help

Social Security Disability Resource Center

SSDI-Guide for Individuals

Resources For Deaf And Hard Of Hearing College Students

Health & Disability Advocates

Hire Disability Solutions

National Alliance on Mental Illness

National Disabilities Network

Shriners Hospital for Children

Applying for SSD with Neurofibromatosis

Ultimate Guide to Social Security Benefits

Disabilty Resources

Disability Advisor


Legal and Americans With Disabilities Act

Department of Justice ADA Home

Job Accommodation Network

Mid-Atlantic ADA Center


National Organizations

American Speech-Language-Hearing Association

Described and Captioned Media Program

CapTel - The Captioned Telephone

Center for Hearing and Communication

Hearing Health Foundation

Hearing Loss Association of America


National Association of the Deaf

National Business and Disability Council

National Center for Accessible Media

National Council on Disability

National Dissemination Center for Children with Disabilities

National Deaf Education Center

Registry of Interpreters for the Deaf

Technology Information Telecommunications


Neurofibromatosis Type 2

Acoustic Neuroma Association

Association of Late Onset Deafened Adults (ALDA)

House Research Institute

Let Them Hear Foundation

NF2 Advocure

NF2 Crew

National Institute on Deafness & Other Communication Disorders

Deaf Linx

NF2 Is...

NF2 Glossary


Plexiform Neurofibromas

Neurofibromatosis Therapeutic Acceleration Program


Other Resources


American Brain Tumor Association

American Chronic Pain Association

Epilepsy Foundation of America

Learning Disabilities Association

LD Online

Let’s Face It

Easter Seals

Littlest Tumor Foundation

Tissue Donation

MedLine Plus

Epilepsy Foundation

Pediatric Reno-Vascular Hypertension (pRVH)



Assistance Dogs

Assistance Dogs International

Pet Partners

Dogs for the Deaf

International Association of Assistance Dog Partners

Susquehanna Service Dogs


Connect With Others

Camp New Friends

Inspire - The Neurofibromatosis Network Support Community

Just Ask

Beauty Mark Nation



Health Care/Insurance

NORD's Patient Assistance Programs

Patient Advocate Foundation


Covering Kids & Families


Medical Care

NYU Langone Heath Comprehensive NF Center

“Plan Finder” Reviews Medicare 2012 Plan Options


United Healthcare Children's Foundation

The House of Charity

First Hand Foundation

Healing the Children

Operation Access

Health Resources and Services Administration


NF Information in Spanish

NINDS NF in Spanish

March of Dimes in Spanish

Amigos con Neurofibromatosis Mexico

KidsHealth - NF in Spanish



Angel Flight

Air Charity Network

Mercy Medical Airlift

Miracle Flights for Kids

Air Ambulance