Osteogenesis imperfecta congenita microcephaly and cataracts
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.
Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone Diseases, Thursday, September 11, 2014
Location: Hilton Americas, Houston, TX
Description: <p>This workshop, coordinated by the National Bone Health Alliance (NBHA) in partnership with the Rare Bone Disease Patient Network and with the support of the American Society for Bone and Mineral Research (ASBMR) and the United States Bone and Joint Initiative (USBJI) aims to: 1)Convene a multi-disciplinary group of experts including researchers, clinicians, and patients with rare bone diseases to advance our understanding of skeletal biology and encourage the development of novel therapies to improve outcomes for individuals with both common and rare bone diseases;<span> </span>2)Identify gaps in our knowledge regarding the biologic mechanisms underlying rare bone disorders and share effective research strategies in translational and therapeutic areas;<span> </span>3)Encourage broad participation both by holding the event the day before the ASBMR 2014 Annual Meeting and providing funding for a significant number of young investigators to attend; and 4)Disseminate the results broadly by publishing the proceedings of the program in a peer-reviewed journal.</p>
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.
Assessing the Impact of Osteogenesis Imperfecta on Non-Skeletal Systems, Wednesday, April 18, 2012 - Friday, April 20, 2012
Location: Sheraton Gateway Suites, Rosemont, IL
Description: This meeting will focus on the impact of abnormal collagen on health in an effort to broaden professional awareness of the full spectrum of issues faced by persons with OI as they age. The goals are: 1)-to review current knowledge regarding the impact of OI on a wide range of bodily systems during the aging process, 2)-identify major information gaps, 3)-make recommendations to expand the OI research agenda. A Workshop Report will be compiled following the meeting in order to share these findings with health professionals and the OI community.
Improving Musculoskeletal Outcomes for Individuals with Osteogenesis Imperfecta, Wednesday, April 07, 2010 - Friday, April 09, 2010
Location: Sheraton Gateway Suites, Rosemont, Illinois
Description: The goals of this workshop were to (1) assess the state of knowledge regarding the musculoskeletal aspects of aging with osteogenesis imperfecta (OI); (2) explore the potential for new diagnostic and therapeutic techniques for OI; and (3) build a consensus on essential measures for documenting OI treatment outcomes.
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.