Best vitelliform macular dystrophy
Other Names for this Disease
- Best disease
- Best macular dystrophy
- Macular degeneration, polymorphic vitelline
- Vitelliform macular dystrophy type 2
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.
The First International Symposium on Translational Clinical Research for Inherited and Orphan Retinal Diseases, Friday, November 05, 2004 - Sunday, November 07, 2004
Location: Wardman Park Marriott Hotel, Washington, DC
Description: This international symposium was sponsored by the National Eye Institute; the Office of Orphan Products Development of the Food and Drug Administration; the Office of Rare Diseases (ORD); and the National Neurovision Research Institute, Foundation Fighting Blindness. The goals were to promote drug and genetic translational clinical research for rare retinal disease therapies; review status, case studies, and challenges of inherited rare disease research; facilitate interaction across vision, neurology, gerontology, and audiology; define the strategies and dynamics for commercializing orphan treatments; and prioritize and develop strategies for intellectual property, operational, and financial avenues to bring new therapies to patients.