Kennedy's Disease
What is Kennedy's Disease?
Kennedy's Disease is a rare neuromuscular disease involving the mutation of the androgen receptor.
Last updated 14 Mar 2013, 11:15 AM
14 Mar 2013, 11:15 AM
Hello. Im Eric and 1 year ago I was diagnosed with Kennedys Disease. (KD) Since then I have been on many Rare disease websites. A few of them have it listed, and one or two have actually got members with KD. Once again I am the first person to register on this site with KD. I started a group on Facebook and we now have 67 members. Our members include 12 Males with KD, 20 Female carriers, several people who have yet to be tested, and the rest are supporters and friends. Its a very open and friendly place and well worth joining. The name of our group is; Kennedys Disease. Raising Awareness and a place to share experiences The 'Kennedys Disease Association.org which is based in America, is definiteley the most up to date and informative website, and I would reccomend anyone with KD to join. They also raise funding for research and they have recently added a section called; Great Britain Team - GB We are also in the process of building a website which should be up and running very soon. Best wishes to you all. Eric Mager
Clinical Trials
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.
- Complete the screening form.
- Review the informed consent.
- 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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Looking to contact others with KD. Join me on Facebook and help raise awareness. The group has a lot of support from other males...
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Raising awareness.
Created by norsegod | Last updated 14 Mar 2013, 11:15 AM
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