Sickle cell anemia
- HbS disease
- Hemoglobin S Disease
- Sickling disorder due to hemoglobin S
News & Events
ORDR Co-Sponsored Conferences
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015
Location: Building 31, 6C, Room 6, 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.
American Society of Gene & Cell Therapy (ASGCT) 18th Annual Meeting, Wednesday, May 13, 2015 - Saturday, May 16, 2015
Location: New Orleans, LA
Description: From our plenary lectures, this year to be given by Drs. Steven Rosenberg and Anthony Atala, to our 19 scientific symposia featuring invited speakers from across our discipline, to our nightly abstract poster receptions, where the majority of the over 700 abstracts submitted to the Annual Meeting are presented, the ASGCT Annual Meeting is certain to be the premiere scientific meeting in our field.
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.
Gene Transfer and Rare Diseases Workshop, Thursday, September 13, 2012
Location: Rockville Hilton, Rockville, Maryland
Description: The NIH Office of Biotechnology Activities and Office of Rare Disease Research, NCATS, are co-sponsoring a workshop to discuss the advances in and challenges of gene transfer for rare diseases. There have been recent promising clinical successes in gene transfer protocols for rare diseases, such as retinal degeneration, hemophilia, and immune disorders. Investigators will discuss their results to date and opportunities and challenges for extending these successes to other similar rare diseases. The panel discussions will focus on strategies for maximizing opportunities for data sharing or platform development.
Newborn Screening in the Genomic Era: Setting a Research Agenda, Monday, December 13, 2010 - Tuesday, December 14, 2010
Location: Rockville, MD
Description: This meeting allowed leaders in the fields of genomics and newborn screening to learn from each other and together explore new ways to advance research on new genomic technologies, potential health applications for newborn screening and beyond, and related ELSI issues.
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.
Thrombospondins and other Matricellular Proteins in Tissue Organization and Homeostasis, Sunday, July 18, 2010 - Friday, July 23, 2010
Location: Snowmass Village Conference Center, Snowmass, Colorado
Description: The purpose of this conference was to focus on the important group of matricellular proteins that have context-specific functions in all major body tissues and are now appreciated to have roles in multiple physiological and pathophysiological processes including development, human genetic diseases, inflammation and wound healing, diabetes, renal disease, heart disease, lung disease, musculoskeletal disorders, and cancer. The objectives of this meeting were to enhance, inspire, and accelerate fundamental research and translational applications in this area by bringing together active researchers and complementary experts who would not otherwise have an opportunity to meet and exchange data, ideas, and reagents. Importantly, a goal of this conference was to further the development of young scientists in the field by engaging them through meaningful interactions with senior scientists and exposing them to the field in its broadest context.
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.
Workshop on Nutrient Metabolism in the Genetic Anemias and Dietary Supplements of Potential Benefit to Patients with Sickle Cell Disease, Tuesday, May 25, 1999
Location: Bethesda, MD
- NIH Consensus Development Conference
Hydroxyurea Treatment for Sickle Cell Disease
February 25, 2008 – February 27, 2008
Click here to learn more about this conference.