We KNOW that the holy grail for all of us is research into CMT. Unless you are already a patient at a research center, it’s really difficult to know what to do to help.
Well, anyone with CMT, anywhere in the world, can join the Inherited Neuropathy Consortium’s Contact Registry. This is a database, securely held at the University of Florida, that you can sign up to, and that is used by members of the Inherited Neuropathy Consortium (headed by Dr Mike Shy and Professor Mary Reilly) to send research surveys.
We need to get LOTS more people signed up. Go to http://rarediseasesnetwork.epi.usf.edu/INC/index.htm to learn more and to sign up to the Contact Registry. And please SHARE this post on as many CMT Facebook pages as possible, regardless of which country you are in!
The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge.
Resources : Thanks to Karen Butcher