1st Advances in Rare Bone Diseases Scientific Conference
October 23-24, 2008, Bethesda, Maryland
During the last two decades there have been significant advances in the treatment and understanding of the most prevalent bone diseases, osteoporosis and Paget's disease of bone. However, the situation regarding rare bone diseases is very different. There is much work to be done to better understand the science related to these diseases and to develop treatments.
To address that situation, the U.S. Bone and Joint Decade in partnership with the Rare Bone Disease Patient Network organized a conference, 1st Advances in Rare Bone Diseases, that took place October 23-24, 2008, at the National Institutes of Health. A Scientific Program Committee including recognized clinical and scientific leaders in the rare bone disease community and the broader scientific community was organized to plan the conference.
This conference brought together leading international authorities to share and discuss the latest diagnostic and therapeutic advances in eight rare diseases of the musculoskeletal system. The biologic and genetic mechanisms underlying each disease as well as treatment approaches using nano engineering and small molecule drug design were on the program. Additionally, scientists and clinicians interacted with invited patient groups to generate an advocacy movement for supporting further research in these diseases. This conference presented the leading research on developmental, metabolic, and immunologic mechanisms responsible for rare diseases of the musculoskeletal system.
The program agenda included the following topics: skeletal development, the role of the nervous system in skeletal biology, novel therapeutics, molecular signaling, non-coding segments and modifiers of gene expression, and others. Additionally, "fire-side chats" between the presenters and patients formed the basis for increasing awareness of the diseases.
This is the first conference dedicated to the broad field of rare bone diseases. The genesis for the idea of a conference grew out of the initiatives of the Rare Bone Disease Patient Network. The discussion was disease specific and intended to find common ground whereby partnerships between the biomedical research community and the lay foundations can work together to conduct further education and research in these diseases.
The objectives of the conference were:
1. to examine the latest advances in basic, translational, and clinical research relating to a series of genetic bone diseases
2. to understand how recent advances may be applied to bone biology and clinical osteology
3. to allow selected trainees and junior faculty to present their work to experts in the field
4. to allow an interested lay audience to interact with scientific and medical experts in these diseases, as well as the pharmaceutical industry involved in bone and orphan diseases
5. to forge new areas of understanding and highlight the need for research and therapeutics.
Abstracts of conference presentations are available on BoneKEy.
A report on the conference by the co-chairs is available by clicking here.
It is hoped this conference will result in an expansion of research on rare bone diseases and generate an ongoing exchange among scientists investigating these afflictions. Moreover, information from the conference will be used to explore the possibility of issuing "request for application" announcements from funding agencies such as the NIH.
Funding for this conference was made possible (in part) by 1R13AR056542-01 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, with co-funding from the National Institute of Diabetes and Digestive and Kidney Diseases, Office of the Director, National Institutes of Health, and the Office of Rare Diseases, National Institutes of Health. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.
Additional support for this conference was obtained in the form of educational grants from the American Society for Bone and Mineral Research; BioMarin Pharmaceutical, Inc.; Enobia Pharma, Inc.; Genzyme Corporation; Hope and Grace Foundation; International FOP Association; Kyowa Hakko Kirin Company, Limited; Orthopaedic Research Society.
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