hnpp.org _______________________________________
 

  Organizations and Web Sites which support or mention HNPP

Back to Home Page

 

Charcot-Marie Tooth Organization (CMTA) -  The CMTA is a nonprofit organization founded in 1983 whose goals are patient support, public education, promotion of research and ultimately the treatment and cure of CMT. The membership of the CMTA is comprised of CMT patients/families, supportive friends and medical professionals. The Charcot Marie Tooth Organization publishes a newsletter four times per year. The web site contains a Bulletin Board.

CMT International - CMT International is a worldwide organization run by and for people who have Charcot-Marie-Tooth disease or HNPP. CMT International is open to all those who have CMT and HNPP, their families and caregivers as well as any health care professional interested in CMT/HNPP. CMTI publishes a variety of pamphlets specific to many symptoms and experiences secondary to CMT and has one specifically on HNPP. Also available to contributing active CMT International members is our chat line on the Internet where members can discuss CMT/HNPP related topics anytime. Charcot Marie Tooth International publishes a newsletter six times per year and usually feature several pages on HNPP in each issue. Web site: cmtint.org; e-mail: cmtint@vaxxine.com ; Tel: (905)687-3630; Fax: (905)687-8753

 

CMTnet - This is a website dedicated to CMT. There is much information that pertains to both CMT and HNPP disorders

 

Harvard Neurology Web Site - The Harvard Web site is run by John Lester. There is a bulletin board with information with HNPP listed under Charcot Marie Tooth and a CMT chat room: Chat Room link

 

MDA - The Muscular Dystrophy Association supports people with CMT through their clinics. At this point they will consider support of people with HNPP on an individual basis.

 

NORD - The National Organization of Rare Disorders (NORD) plans to develop information regarding HNPP. Keep checking. When checked in July of '98, NORD did have information on HNPP available. The information was free, but turned out to be OMIM clinical synopsis (found elsewhere on this site). Shipping and handling charges were $7.50.

 

The Neuropathy Association - The Neuropathy Association was started in 1997 and covers neuropathies in general. Good, basic information is available at this site regarding peripheral neuropathy. This site also contains a bulletin board type support group. There is very little here that is specific to HNPP.

Last updated: 1/00

Home / What is HNPP? / Other names for HNPP / Varieties of HNPP / HNPP Symptoms / The Genetics of HNPP / Number of People affected / Getting Diagnosed / The Genetic Test / Progression / HNPP Articles and Other Links of Interest / Other Organizations supporting HNPP / Q and A/FAQs / Prevention is key / Conservative management of HNPP / Toxic drug List / Surgery and HNPP / Letter to Surgical Team / Helpful hints by and for people with HNPP / People Say this works for them / Join HNPP e-mail support group / Life with HNPP / Survey of individuals with HNPP / Personal Stories / Significant HNPP Symptoms / Pain / Learning to Pace Activity / Adapting the house, etc / Equipment fundiing / Doctors who treat HNPP / HNPP Researchers / HNPP Experts / Research Studies / Disability and ADA / People First language / Tax Deductions / Glossary / Contact Maureen