Idiopathic Thrombocytopenic Purpura is a condition in which the blood does not clot as quickly as it should due to a low number of platelets.
|Annabelle||Find a hematologist who is very familiar with ITP...not all hematologists/oncologists are. If you are seeing a doctor who says steroids and splenectomy are the only two treatments available, you know you're seeing someone who's about 10-15 years behind the curve.|
Hi - I was treated with IVIG, Ratuxin, Prednisone and CellCept. It wasn't until they started the CellCept that any change occurred....keep the faith...there is also High Dose Cytoxan if everyting else fails. I know you posted a while ago, and I hope everything as worked out. Best of Luck to you.
My son, 20, has tried started treatment with no positive results. Anyone have info on results and what comes next? Predinsone - no change WinRho - no change He starts IV immunoglobulin this week. Any info on that?
|UK ITP Support Association||
The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Immune (Idiopathic) Thrombocytopenic Purpura.
|Platelet Disorder Support Association||
The Platelet Disorder Support Association is a non-profit corporation founded in August, 1998 to provide information, support, and encourage research about ITP and other platelet disorders.
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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