by Courtney | May 2, 2017 | CMT Update Spring 2017, Featured
The National Organization for Rare Diseases (NORD)—an independent charity that built its natural history study platform for rare diseases and is supported by a cooperative agreement by the U.S. Food and Drug Administration (FDA)—has awarded HNF funding to build a...
by Courtney | Apr 27, 2017 | Awareness, Bike New York, CMT Update Spring 2017, Featured
Q: Tell us about yourself: do you live? Favorite hobbies? A: I’m 53 years old and live in Newark, Delaware with my wonderful wife Nancy. We have three grown sons, none of which show any signs of CMT. I enjoy cycling and ride every chance I get. I love to play...
by Courtney | Apr 27, 2017 | CMT Update Spring 2017, Featured
CMT/Inherited Neuropathies Patient-Reported Survey Needs You to Advance Therapies HNF has launched a new Patient-Reported Research Study to advance therapies for CMT and inherited neuropathies (IN) in an effort to collect comprehensive data for a better understanding...
by Sean Ekins, Phd, DSc | Apr 24, 2017 | CMT Update Spring 2017, Featured, Research and CMT
Gene therapy represents an exciting new frontier being explored for treating a number of diseases. Currently, gene therapy is being used in a clinical trial to treat one of the rare forms of inherited neuropathy (IN), giant axonal neuropathy (GAN). Because of the...
by Courtney | Mar 23, 2017 | Awareness, CMT Update Spring 2017
Charcot-Marie-Tooth Disease Awareness Problem from Hereditary Neuropathy Foundation on Vimeo. If you walked up to a group of people in your town, your city, your school, or your neighborhood…and asked them if they ever heard about Multiple Sclerosis, the majority...
