Organizations and Web Sites which support or mention HNPP

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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:; e-mail: ; 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

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