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National Institure for Health News

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

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:

Medical Assistance

For information regarding:
SSI: www.socialsecurity.gov
PA CHIP Medical Insurance: www.chipcoverspakids.com
PA Medical Assistance: www.humanservices.state.pa.us/Compass.web

The NFCA is an independent organization, not affiliated with national organizations related to Neurofibromatosis.

Defining the Future of Neurofibromatosis Research

Generation Hope

Learning Disabilities Association

Children’ Tumor Foundation: Ending Neurofibromatosis (NF) Through Reasearch

Neurofibromatosis Association – United Kingdom

Neurofibromatosis, Inc.

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 at www.nf2crew.org or subscribe directly by writing to NF2_Crew-subscribe@yahoogroups.com

For NF2 inquiries re Hearing Loss (PA)

Teresa A Nellans MA MBA, PA Ofc Deaf and Hard of Hearing
Pennsylvania Depts., Legislature, Courts, PUC
Summary of Civil Service jobs
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
Self Help for Hard of Hearing PA and Pittsburgh
PA Resource and Info Svs for Spec. Edu.
Western PA School for the Deaf
Library Resources — loans books/videos
Telecommunication devices for low income

National Organizations

Technology information, telecommunications
National council on disabilities — Information on all disabilities
National Information Center Deafness
Federal information on disabilities
National Rehab Info Center — Databases, etc
The American Speech–Language–Hearing Association
National Registry of Interpreters for the Deaf
National Association of the Deaf and Legal Aid
National Info Center For Children, Youth w/ Disabilities
Abledata — Database of technology, equipment
Self Help for Hard of Hearing People
Hearing Health Magazine
Captioned Films Videos for Deaf and Hard of Hearing
Database on Internet accessibility, resources
League of Hard of Hearing New York — Resources, info
National Business Disability Council — Matches disabled college grads with jobs.
Tech Connections — Vendors
Free CapTel Phone Application Form

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

Susquehanna Service Dogs (Hbg)
International Association of Assistance Dog Partners
Delta Society — Info dogs, animals
Dogs for the Deaf — Services national
Assistance Dogs International, Inc. — Lists dog programs

Neurofibromatosis Webring
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