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Charcot-Marie-Tooth Disease

What is Charcot-Marie-Tooth Disease?

Charcot-Marie-Tooth disease is an inherited neurological disorder.

 

Charcot-Marie-Tooth disease is an inherited neurological disorder.
Acknowledgement of Charcot-Marie-Tooth Disease has not been added yet.
32.5http://www.orpha.net
Synonyms for Charcot-Marie-Tooth Disease has not been added yet.
Cause of Charcot-Marie-Tooth Disease has not been added yet.
Symptoms for Charcot-Marie-Tooth Disease has not been added yet.
Diagnosis of Charcot-Marie-Tooth Disease has not been added yet.
Diagnostic tests of Charcot-Marie-Tooth Disease has not been added yet
Treatments of Charcot-Marie-Tooth Disease has not been added yet.
Prognosis of Charcot-Marie-Tooth Disease has not been added yet.
Tips or Suggestions of Charcot-Marie-Tooth Disease has not been added yet.
References of Charcot-Marie-Tooth Disease has not been added yet.
This college student living with Charcot-Marie-Tooth is one of the first to undergo experimental gene therapy treatment Created by RareshareTeam
Last updated 29 Jul 2018, 03:52 PM

Posted by RareshareTeam
29 Jul 2018, 03:52 PM

Read about Delaney's journey and CRISPR gene therapy research here.  Have you ever participated in a research study or clinica trial?

Any news on Gene therapy? Created by micdesa
Last updated 31 Mar 2016, 08:49 AM

Posted by micdesa
31 Mar 2016, 08:49 AM

"Gene Therpay":http://www.ncbi.nlm.nih.gov/pubmed/24162799

CMT - axonal degeneration Created by lsames
Last updated 6 Aug 2008, 01:33 AM

Posted by lsames
6 Aug 2008, 01:33 AM

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....

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Charcot-Marie-Tooth Association

The CMTA is a 501(C)(3) nonprofit organization founded in 1983 whose goals are patient support, public education, promotion of research and ultimately the treatment and cure of CMT.

03/20/2017

Clinical Trials


Cords registry

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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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.

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Any news on Gene therapy?

Created by micdesa | Last updated 31 Mar 2016, 08:49 AM

CMT - axonal degeneration

Created by lsames | Last updated 6 Aug 2008, 01:33 AM


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