Other Names for this Disease
News & Events
ORDR Co-Sponsored Conferences
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015 - Wednesday, June 10, 2015
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.
James B. Herrick Symposium - Sickle Cell Disease Care and Research: Past, Present, and Future, Tuesday, November 16, 2010 - Wednesday, November 17, 2010
Location: NIH Campus, Bethesda, MD
Description: To mark the centennial of the publication of Herrick’s case report, the National Institutes of Health (NIH) announced the James B. Herrick Symposium - Sickle Cell Disease Care and Research: Past, Present, and Future held on November 16-17, 2010, on the NIH campus in Bethesda, Maryland. National and international experts in sickle cell care and research examined the history and societal impact of the disease and placed the disease within the context of existing and future basic, translational, and clinical research. Invited speakers addressed unresolved challenges and the ongoing burden of the disease. They also focused on genetic, cellular, and clinical perspectives across the lifespan as well as existing therapeutic options and possible future treatments.
2010 Genetic Alliance Annual Conference , Thursday, July 15, 2010 - Sunday, July 18, 2010
Location: Bethesda North Marriott Hotel and Conference Center , Bethesda, Maryland
Description: The Genetic Alliance Annual Conference is consistently inspirational and enables partnership among all stakeholders: advocates and community leaders, health and industry professionals, policymakers and academicians.
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.
Working Group on Sickle Cell Disease: Inflammation, Thrombrosis and Vascular Injury, Wednesday, October 28, 2009
Location: Bethesda, MD
Description: The goals of the working group were to identify research priorities for translational II research in sickle cell disease. The working group was designed to foster cross-disciplinary communication and to ensure that other disciplines and skill sets are included in sickle cell research. These priorities—the study designs, methods, disciplines, and skill sets—will be included in an RFA on this topic.