One of the things one does to live with NF2 is assemble a list of the best resources of information available for treatment, doctors, research and more. To help your information-gathering efforts, here is a list of websites we’ve assembled by members of the NF2 Crew. This list is always growing and we would love to hear about sites you recommend. If you have a link you would like to share on this page, please CLICK HERE and let us know. Thank you!
NOTICE: While the NF2 Crew is NOT an authoritative medical source, these sites are worthwhile in our opinion.
Acoustic Neuroma Brazil – Website for people in Brazil.
Acoustic NeuromaBrain Tumor Centers- Clinical Trials and Noteworthy Treatments for brain tumors
Acoustic Neuroma Assoc of Canada – The Acoustic Neuroma Association of Canada is a patient-headed, peer support group. It is an incorporated, registered, non-profit organization recognized as such by Canada Revenue Agency.
Acoustic Neuroma Assoc of US - ANA is a patient member organization, providing information and support to persons diagnosed with or treated for acoustic neuroma and other benign tumors of the cranial nerves.
Assistive Technology
CapTel - A phone that displays the captions of everything the caller says.
AFB - American Foundation for the Blind: tips for computer users with low vision.
Silent Call Communications - A company that provides systems for people who are deaf, deaf/blind, hard of hearing and those who are out of hearing range.
Harris Communications - A retailer of assistive products for Deaf and Hard of Hearing.
Ultratec – Assistive devices for the af and hard of hearing.
NFSS Communications - Assistive devices for deaf, blind, mobility issues, etc.
Soundbytes - Products for deaf and hard of hearing.
Hearing Aid Telephone Interconnect Systems (HATIS) - If you wear hearing aids and have trouble talking on the phone or listening to your MP3 player Hatis is the solution for you.
ATT Relay Services - Various relay services.
ATT Internet Relay – IM Relay
MCI IP Relay - IP Relay
Sprint Relay Online - Many relay services.
Blogs
Olivia - The Fabulous Running Mommy: I run for a reason.
Johnna – 40 and On: My struggle with NF2 and other life events.
K.C. - So Be It….
Rebecca Dufek - NF2 Odyssey: My journey with neurofibromatosis type 2.
Holly Alonzo - Never Giving Up Hope: deaf, blind and determined..
Captioning
CART - What is Computer Access Real-Time captioning?
DCMP - The Described and Captioned Media Program provides services designed to support and improve the academic achievement of students who are blind, visually impaired, deaf, hard of hearing, or deaf-blind.
WGBH Media Access Group - Dedicated to providing access to present and future media to people with disabilities.
NCI – National Captioning Institute.
Cochlear & Auditory Brainstem Implants
Cochlear Support Center – Resources to help you make the most of your implant experience. Includes a list of ABI Clinics.
House Research Institute - Formerly known as House Ear Institute (HEI)
Deaf Resources
ASL Dictionary – A fantastic asl video dictionary. It has a Main Dictionary, Religous Signs, Conventional Phrases, ASL for Babies and Quiz Me! Products.
RID – Registry of Interpreters for the Deaf
NAD – National Association of the Deaf : The nation’s premiere civil rights organization of, by and for deaf and hard of hearing individuals in the USA.
Hearing Aid Information - Consumer Resources for Hearing Aids.
About.Com Deaf - Way too many resources to list about deafness.
National Cued Speech Association - The National Cued Speech Association supports effective communication, language development and literacy through the use of Cued Speech.
ASLinfo.com - All kinds of information about ASL, Interpreting and Deaf culture.
Dry Eyes
DryEyeInfo.Org - The Definitive Source for Dry Eye Information on the Internet.
The Dry Eye Shop – A bunch of products for dry eyes. Nightwear, drops, lid scrub, etc.
Surviving Dry Eye – Some great information for dry eye sufferers.
Dry Eye Yellow Pages - Find a Doctor Find a Product. Find a Company.
Dry Eye Digest - News and Opinion Blog.
Dry Eye Talk - A message board (forum) for people with. Many topics.
The Dry Eye Zone - The Dry Eye Zone is a resource center for people with severe or chronic dry eye.
Financial Assistance
PPRX – The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
NeedyMeds - NeedyMeds is a 501(c)(3) non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.
Fund-raising
Rebecca’s Fund-raising Page
Debbie & Barb’s Bike4NF
Olivia Hernandez’s Fund-raising Page
Amber’s Fund-raising Page
Run4NF
Anne Shigley’s Fund-raising Page
General Medical Resources
DrugDigest - DrugDigest is a noncommercial, evidence-based, consumer health and drug information site dedicated to empowering consumers to make informed choices about drugs and treatment options.
AskaPatient.com - When you need to know if a medication really works, why not Ask A Patient?
MedicineNet - Similar to WebMD. A huge site of medical info.
Center Watch - The global source for clinical trials information: offering news, analysis, study grants, career opportunities, and trial listings to professionals and patients.
ATA – American Tinnitus Association
Health Link USA - The HealthlinkUSA Talk Health Forum is a place where you can discuss specific health questions and exchange information with others.
Doctor Directory - More targeted links to more actual doctors & physicians websites than any other source.
AMA – American Medical Association
Insurance
CMS – Centers for Medicare & Medicaid Services.
NOSSCR – National Org of Social Security Claimants’ Representatives. There is even a forum on this site for discussion.
Medicare.gov – The Official U. S. Government Site for Medicare.
Covering Kids and Families – A national program working to enroll children and adults in low-cost or fre health care programs.
Living With Disabilities
Social Security and Disabilities Resource Center – You have the question? We have the answer. Information… Discussions… Resources… Answers… Links… Forums…
Disabled Dealer - The Nations #1 “For Sale by Owner” Resource for Buying and Selling.
National Council on Disability - NCD is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
Job Accommodation Network - The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues.
Neurofibromatosis
Brazilian Neurofibromatosis Assoc
Tinnitus - This site is all about tinnitus (and hyperacusis) retraining therapy (TRT).
National Institute of Neurological Disorders and Stroke - NINDS: Neurofibromatosis Information Page.
Interactive Cranial Nerve Chart - A excellent interactive chart of the cranial nerves.
Malignant Brain Tumors & Neuro-Oncology Resources - Information regarding the treatment of malignant brain, spine, and peripheral nerve tumors at Massachusetts General Hospital and links to other nervous system tumor resources.
Associació Catalan de Neurofibromatosis – Ofrecemos apoyo a afectados y familiares.
Neurofibromatosis, Inc - We are the national non-profit network serving families and individuals affected by Neurofibromatosis.
Children’s Tumor Foundation - We are the national non-profit network serving families and individuals affected by Neurofibromatosis.
Neurofibomatosis Association UK
Newsletters
NF News - A newsletter by Children’s tumor Foundation.
NF2 Compass – A newsletter from Advocure NF2, Inc.
Radiosurgery
Univ of Pittsburg – Department of Neurilogical Surgery
Cleveland Clinic - Stereotactic Radiosurgery
San Diego Gamma Knife Center - Gamma Knife Radiosurgery
Gamma Knife in Michigan NEMC: Peacock Information http://www.pslgroup.com/dg/2286a.htm
IRSA – international Radiosurgery Association
Radiosurgeons - International Directory of Radiosurgeons
Research
CTF – Nf2 Trials and Studies
Advocure NF2, Inc. - Advocate For A Cure
CDMRP – Congressionally Directed Medical Research Programs
Schwannomatosis
Wikipedia - All about Shwannomatosis on wikipedia.
Service Dog Programs
DFD- Dogs for the Deaf, Inc.’s mission is to rescue and professionally train dogs to help people and enhance lives, maintaining a lifelong commitment to all dogs we rescue and all people we serve.
Susquehanna Service Dogs - We train and place service dogs and hearing dogs with men, women and children with disabilities to help them achieve greater independence.
IAADP – International Assoc of Assistance Dog Programs
Hearing Dogs – At About.com
Paws with a Cause
Sign Language
Finger-spelling - A great place to test your fingerspelling.
ASL Video Dictionary - The best Video Dictionary. It has a Main Dictionary, Religious Signs, Conversational Phrases, ASL For Babies, and Quizes/tests.
Travel
Ped-Onc Resource Center - A list of organizations provide airline flights for patients that need to travel for medical reasons.
National Patient Travel Helpline - The purpose of the National Patient Travel Center is “…..to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation.”
Angel Flight, Inc - We will arrange free air transportation for any legitimate, charitable, medically related need.
