- Abuelo Forman Rubin syndrome
- Homozygous alpha-thalassemia, genital abnormalities, and terminal transverse limb defects
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ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
Fifth International Conference on Pediatric Mechanical Circulatory Support Systems and Pediatric Cardiopulmonary Perfusion , Thursday, May 28, 2009 - Saturday, May 30, 2009
Location: Hilton Anatole, Dallas, TX
Description: The main objective of this conference was to focus on the current problems associated with pediatric cardiac patients during and after acute or chronic cardiac support. At this conference, we brought together many distinguished physicians and scientists to define precisely the current problems and to suggest solutions with novel approaches.
Clinical Research Priorities for Thalassemia, Wednesday, May 20, 2009 - Thursday, May 21, 2009
Location: Bethesda, MD
Description: The goal of this meeting was to allow interested individuals to express their opinions about the directions clinical research in thalassemia should take, given past experiences and limitations imposed by NIH budgets and regulatory requirements. These proceedings also served as the basis of a Request for Applications (RFA) for clinical trials in thalassemia.