Charcot-Marie-Tooth disease is an inherited neurological disorder.
Nice article, but i already seen it <a href="https://www.google.com/">there</a>
My daughter has Giant Axonal Neuropathy, (GAN). This is an autosomal recessive disorder. The mutation is on the 16th chromosome and the gene is also called GAN. This disorder is very similar to the axonal versions of CMT. We have formed the first org. in the world for GAN and are hosting a scientific symposium to being scientists together to stop this horrific, fatal disease. Please visit our website at www.hannahshopefund.org and let us know what's going on with CMT research for axonal degeneration. Innocent peoples lives depend on us all....
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Sorry for my bad English, but I don't know English very well.
My name is Michele and I live in Italy.
I'm suffering of Charcot Marie Tooth 1B.
I hope that there...
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Created by RareshareTeam | Last updated 25 Jul 2019, 01:34 PM
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