Exostoses, multiple, type 1
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>
Fourth International MHE Research Conference, Thursday, November 01, 2012 - Sunday, November 04, 2012
Location: Philadelphia, PA
Description: The goals of the conference are: 1)-to provide a forum to share the most recent and unpublished findings in these areas amongst the major laboratories working on MHE; 2)-to share this knowledge with experts in closely related fields who can provide critical input and fresh perspectives, and be inspired to work directly on this debilitating and potential serious pediatric disorder individually or in collaboration; 3)-to develop an understanding of the medical and clinical complexity of MHE as thoroughly as possible. MHE children also have additional and potentially debilitating pathologies. This requires the concerted effort of experts in orthopaedics, genetics, enzymology, glycobiology and developmental and cell biology; and, 4)-to share insights gained in animal model systems and in MHE human specimens.
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 Third Multiple Hereditary Exostoses (MHE) Research Conference, Thursday, October 29, 2009 - Sunday, November 01, 2009
Location: Four Points, Sheraton Boston Logan Airport, Boston, MA
Description: This goals of this conference were to promote the exchange of the most current information regarding MHE and the collaboration and synergy among laboratories studying this disease. These goals were accomplished by bringing together world experts in the fields of orthopedics, human genetics, developmental biology, glycobiology, and related human bone diseases and providing them with a highly focused forum to cultivate new ideas and cross-discipline collaborations.