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Leading NF Advocacy
Building NF Community

Other Resources

 

Education

ClinicalTrials.gov - Neurofibromatosis

Genetic Alliance

Genetics Home Reference - Neurofibromatosis type 1

Harvard Medical School Center - Understanding NF1

Johns Hopkins Hospital NF Center

March of Dimes - Neurofibromatosis

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

 

Government & Disability Resources

Map Rx (Medicare Access for Patients Rx)

Potential income tax benefits for families with special needs children

Disability.gov

Social Security Administration

Social Security Disability Help

Social Security Disability Resource Center

SSDI-Guide for Individuals

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

 

Legal and Americans With Disabilities Act

Department of Justice ADA Home

Job Accommodation Network

Mid-Atlantic ADA Center

 

National Organizations

Able Data - Assistive Technology Equipment

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

Medicare

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

NORD Patient Assistance Programs

 

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

AboutFace

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

 

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

Facebook

 

Health Care/Insurance

NORD's Patient Assistance Programs

Patient Advocate Foundation

Health-Insurance.org

eHealthInsurance

Covering Kids & Families

Healthcare.gov

 

Medical Care

“Plan Finder” Reviews Medicare 2012 Plan Options

NeedyMeds

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

 

Transportation

Angel Flight

Air Charity Network

Mercy Medical Airlift

Miracle Flights for Kids

Air Ambulance