Rareshare

I am the parent of a little 8 year old boy who was diagnosed withCDA Type 1 as an infant. I have been trying to find out more about this condition but even his hemotologists have limited info. Right now he is doing awesome but I would like to know how this will affect him as an adult

Posted by Woodworj1
18 May 2012, 02:08 PM

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

Posted by dvlnts
18 May 2012, 08:04 AM

My best wishes goes out to you. i have CDA type 2 wich is more common then then type 1.

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Community Resources

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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.