Helpful Links

National Institute for Health News

Researchers Identify Mechanism and Possible Drug Treatment for Growth of Nerve Tumors in Neurofibromatosis


Newly Diagnosed

If you have a child who has been newly diagnosed with Neurofibromatosis, the American Academy of Pediatrics has issued a policy statement entitled, Health Supervision for Children With Neurofibromatosis. This set of guidelines is designed to assist the pediatrician in caring for the child in whom the diagnosis of neurofibromatosis has been made. Additionally, there is a printable (landscape format ) table: Health Supervision Guidelines for Children With Neurofibromatosis to be used as a checklist for your child’s appointments. For more information, please follow this link to the American Academy of Pediatrics.

If you would like to read recent articles (or past articles) related to Neurofibromatosis, material may be found at New England Journal of Medicine using a search for keyword: Neurofibromatosis or ClinicalTrials.gov by typing in Neurofibromatosis for ongoing research studies.

Here are a few other helpful places to start for information related to Neurofibromatosis:

Learning Disabilities Association
Children’ Tumor Foundation: Ending Neurofibromatosis (NF) Through Reasearch
Neurofibromatosis Association – United Kingdom
NF Network


Assistance

Social Security / SSI
PA CHIP Medical Insurance
PA Medical Assistance
Public Health Law Project — Assists people with disabilities obtain health insurance coverage among other things
PA Department of Labor and Industry — Use keyword OVR
PA Training and Technical Assistance Network
Education Law Center PA — Advocacy for special education
College Resources for Students with Disabilities Guidebook


Website for NF2Crew

The NF2Crew is a discussion group for individuals with Neurofibromatosis Type 2, their spouses, significant others, and/or children. Visit the NF2Crew website or subscribe directly by writing to NF2_Crew-subscribe@yahoogroups.com


For NF2 inquiries re Hearing Loss (PA)

Dept of Labor and Industry — HGA, OVR, ODHH
Technology Lending
PA rehabilitation council — Consumer advisory group
Disability Law Center — For legal protection/advocacy
PA Society for the Advancement Of the Deaf
PA Resource and Info Svs for Spec. Edu.
Carnegie Library — Books on tape for blind and physically handicapped
Captioned Films and Videos  — For deaf and hard of hearing
Telecommunications Devices for Deaf and Hard of Hearing
Tax Tips for the Deaf


National Organizations

Technology information, telecommunications
National council on disabilities — Information on all disabilities
National Information Center Deafness
The American Speech–Language–Hearing Association
National Registry of Interpreters for the Deaf
National Association of the Deaf and Legal Aid
Center for Parent Information and Resources
Abledata — Database of technology, equipment
Self Help for Hard of Hearing People
Hearing Health Magazine
Captioned Films Videos for Deaf and Hard of Hearing
League of Hard of Hearing New York — Resources, info
National Business Disability Council — Matches disabled college grads with jobs
CapTel — Phone for the deaf and state applications for low income


Americans With Disabilities Act

List of lawyers
Department of Justice ADA Home
Job Accommodation Network
MidAtlantic Region ADA Info Center — US Dept. Education


Assistance Dogs

Dog Guard: Guide To Services Dogs — Helpful resource for learning about service dogs
Guide Dogs of America — Guide dogs and instruction in their use, free of charge, to blind and visually impaired individuals in the U.S.
Guide Dog Foundation for the Blind — Guide dogs and training, free of charge, to people who were blind or visually impaired
Dogs for the Deaf — Rescues and professionally trains dogs to assist those with hearing loss and deafness
Susquehanna Service Dogs — Raises and trains services dogs to assist children and adults with disabilities to become more independent
International Association of Assistance Dog Partners — A cross-disability organization representing people partnered with guide, hearing, and service dogs
Delta Society


Neurofibromatosis Webring
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