Links

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.

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NOTICE: While the NF2 Crew is NOT an authoritative medical source, these sites are worthwhile in our opinion.

Acoustic Neuroma/Brain Tumor General Medical Resources Research
Assistive Technology Insurance Schwannomatosis
Blogs Living With Disabilities Service Dog Programs
Cochlear & Auditory Implants Neurofibromatosis Sign Language
Financial Assistance Newsletters Travel
Fund-raising Radiosurgery


Acoustic Neuroma/Brain Tumor

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.
Cancer.net –  Cancer.net is geared towards Cancer but also lists general financial
information such as national and local service organizations, travel
and housing assistance, medication and treatment cost assistance and
general financial information. This information should also be
beneficial for NF2.

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…
Social Security Disability Help - Social Security Disability Help makes the legal services and legal counsel of attorneys and disability advocates availble to claimants across the United States.
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.
NF Network - 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.
The Neuro Foundation UK - The Neuro Foundation’s vision is to improve the lives of those affected by Neurofibromatosis.
Interactive spine Chart - This Spinal Chart is designed to give you an interactive look at just some of the relationships between the areas of your spine and your nervous system. Keep in mind that your nervous system is much more complex than can be shown here.

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.

 

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