Arthrogryposis Multiplex Congenita is a rare, non-progressive, congenital disorder characterized by multiple joint contractures, including muscle weakness and fibrosis.
Hi, Not sure if anyone looks at these posts, but I'm interested in corresponding. My 27 year old son has AMC and I have 4 other children from 29 to 9 years old. I've been involved with the support group for Arthrogryposis since it began.
dolphinsj87 sorry to hear about your mother. Mine has been gone about 20 years. I would enjoy corresponding with you and others by mail. My address is Joy Guinn, # 45, 4700 NW Cliffview Dr. Riverside, MO 64150. I have a pet bird name Frankie who lives on me all day and sleeps in her cage at night. I enjoy any handwork. I have a DSI and enjoy watching movies.
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.
I am Secretary of The Australian Arthrogryposis Group.
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