Other Names for this Disease
- Anemia congenital erythroid hypoplastic
- Anemia Diamond Blackfan type
- Aregenerative anemia chronic congenital
- Blackfan Diamond syndrome
The Spectrum of Caregiving and Palliative Care in Rare Diseases, August 2014
Location: NIH Natcher Conference Center, Bethesda, MD
Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.
RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , Thursday, March 18, 2010 - Saturday, March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires, Argentina
Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
Diamond Blackfan Anemia International Consensus Conference, Saturday, March 13, 2010 - Monday, March 15, 2010
Location: New York, New York
Description: This conference was expected to generate immediate and long-term contributions to clinical care and basic and translational research similar to those generated by previous conferences. Outcomes from previous conferences have dramatically expanded awareness of this disease among physicians and scientists, led to improvements in patient care and new clinical trials, and shed light on the role of the ribosome in human disease. These meetings are not only important to Diamond Blackfan anemia (DBA) but also to other diseases involving the ribosome (5q- syndrome; other bone marrow failure syndromes) and signaling pathways important for cancer biology. New clinicians and scientists are recruited to the field each year.