Idiopathic Autoimmune Hemolytic Anemia is a reduction in the number of red blood cells due to the body's immune system.
So sorry to hear about your son. I'm not sure where you live, but I see Robert Brodsky at Johns Hopkins. I have several different hematologist problems - Red Cell Aplasia is not one of them. Dr. Brodsky is the world leader in Auto Immune Disease - he has saved my life, literally. If you don't live near Baltimore - it may be his office can refer you to someone in your area. Best of luck to you and your family.
My son just had a bone marrow transplant. He has red cell aplasia, and they suspect that his immune system is keeping him from making red blood cells. I'm desperate to find more information about red cell aplasia and would love to find someone who underwent a bone marrow transplant for this disorder. There is no organization or resource I can find for specific information. Any suggestions would be greatly appreciated. There is no guarantee that the transplant will correct this problem. He is only 11, and I wonder how this will affect his growth and development.
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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