Other Names for this Disease
- Albinism with hemorrhagic diathesis and pigmented reticuloendothelial cells
- Delta storage pool disease
- Hermansky Pudlak syndrome
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.
Insights into the Pulmonary Fibrosis of Hermansky-Pudlak Syndrome, Thursday, September 15, 2011 - Friday, September 16, 2011
Location: Lawton Chiles International House (Stone House), National Institutes of Health, Bethesda, MD
Description: The goals of this conference are to guide the future direction of studies focusing on pathogenic mechanisms of Hermansky-Pudlak syndrome (HPS) pulmonary fibrosis and to identify potential therapeutic strategies for the treatment of pulmonary fibrosis of HPS.
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.