The Spectrum of Caregiving and Palliative Care in Rare Diseases, Winter 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.
International Consensus Conference to Develop Improvement Criteria for Juvenile Dermatomyositis and Adult Dermatomyositis and Polymyositis: Workshop to Define Minimal Clinical Improvement and Major Clinical Response , Monday, June 09, 2014 - Tuesday, June 10, 2014
Location: Hotel Novotel La Defense, Paris, France
Description: Anticipated goals and use of results: We anticipate developing composite endpoints for future clinical trials that will be fully validated, endorsed by the ACR and EULAR, and used by all forthcoming myositis clinical trials and clinical studies as clinical endpoints. A likely secondary outcome of this work would be the stimulus to develop new therapies for myositis and conduct clinical trials of new therapeutic agents in myositis patients, given adequate ways to assess efficacy of new therapies in trials.
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.
Treatment Strategies for Neuromuscular Diseases: The Challenge of Recruitment, Monday, September 20, 2010 - Wednesday, September 22, 2010
Location: Beaver Hollow Conference Center, Java Center, NY
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.
Workshop on Inflammatory Myopathy, Wednesday, April 05, 2000 - Thursday, April 06, 2000
Location: NIH Campus, Bethesda, MD
Description: The goal of this workshop was to provide a forum for researchers in the areas of myositis, muscle biology, and immunology to review the current status of research on inflammatory myopathies and explore potential new avenues of research.