Congenital Dyserythopoietic Anemia is a rare genetic blood disorder.
Hi there, we have a group in Yahoo Groups too of which everyone has type 2 with the exception of us 2 Canadians :P If you look for CDA (spelled out) support group you'll find us which is much more active :) Cheers, Jessica
My best wishes goes out to you. i have CDA type 2 wich is more common then then type 1.
Hi Ashleigh, Thank you for replying. I told my daughter about you today and will send you her email as well. She was excited to hear about you. We have all done some research on the disorder but like you say there are not many papers published on CDA 1. No one in the hospital home had ever heard of it. Greyson was diagnosed by the German Registry sometime in Dec. Some tests were done in Vancouver and another sample of bone marrow went to the Mayo clinic, which came back neg. for cancer. He had a very rough beginning but is now progressing very well and his Drs. are amazed. He is having Interferon injections 3X per week. He has has numerous blood transfusions but went 6 weeks before needing one about 3 weeks ago. From birth it was every 10 to 12 days. I'm sure you have lots to share and I really appreciate your reply and offer of help and support. Will send you an email and photo now. Marty
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.
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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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