Alpha mannosidosis type 2
- Alpha-mannosidosis adult-onset form
News & Events
ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
Lysosomal Disease Network's 10th Annual WORLD Symposium 2014, Monday, February 10, 2014 - Friday, February 14, 2014
Location: Manchester Grand Hyatt San Diego, San Diego, CA
Description: This symposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries in the management and treatment of lysosomal diseases, and the clinical investigation of these advances. This meeting will help researchers and clinicians to better manage and understand diagnostic options for patients with lysosomal diseases; to identify areas requiring additional basic and clinical research, public policy and regulatory attention; and to identify and explore the latest findings in the natural history of lysosomal diseases.
2013 Lysosomal Disease Gordon Research Conference and Gordon Research Seminar, Saturday, April 13, 2013 - Friday, April 19, 2013
Location: Lucca (Barga), Italy
Description: Conference goals: To support participation by junior investigators, including graduate students, postdoctoral fellows and new investigators who do not yet have individual and/or independent sources of funding to support their participation in such conferences. The goal is to have at least 40% of the participants at this meeting in this category and NIH funding will help ensure this level of participation. Indeed, at the 2011 inaugural meetings, fully one-third of the participants were graduate students/postdoctoral fellows/junior faculty. The selection of the meeting as host to a GRS will further enhance such participation by the next generation of leaders in the lysosomal disease research community. To further stimulate applications by investigators-in-training, a number of short talks will be chosen prior to the meeting based on abstract submissions, and moreover, a poster session, comprising nine short talks, will be chosen at the meeting on the basis of the posters which generate the most interest during the afternoon poster sessions.
WORLD Symposium 2010 (Lysosomal Disease Network's 6th Annual Research Meeting), Wednesday, February 10, 2010 - Friday, February 12, 2010
Location: Miami Hilton Downtown, Miami, Florida
Description: The specific aims of this meeting were to (1) emphasize the strategies for, and identify the obstacles to, moving from translational research to clinical trials; (2) coalesce members of the LD network into functional research collaborations and present to the LDN community progress on the specific projects that are part of the funded U54 RDCRN grant; (3) foster interdisciplinary collaboration with the overall goal of improving knowledge of basic discoveries and clinical manifestations of these diseases; (4) provide an educational forum for young investigators, clinicians, and researchers in the field; (5) identify and discuss the latest findings in the natural history of lysosomal diseases, diagnostic testing and screening, and treatment, with specific focus on (a) inflammatory components of lysosomal diseases and autophagy, especially in the central nervous system, (b) new treatments of the central nervous systems, and (c) ethics and efficacy in treating the presymptomatic or asymptomatic patient; and (6) identify areas requiring additional basic and clinical research and public policy and regulatory attention, such as ethics and economics, and factors that impact implementation of therapy, including newborn screening.
- 2012 International Conference for Glycoprotein Storage Diseases, July 27, 2012 - July 30, 2012
Location: Crowne Plaza Hotel, Charleston, SC
Description: The International Society for Mannosidosis & Related Storage Diseases (ISMRD) is sponsoring the 2012 International Conference for Glycoprotein Storage Diseases. The Scientific/Family meetings will be held concurrently on July 28th and 29th. Alongside this meeting, they are hosting the extension of the Natural History Study, with clinic days on July 27th and 30th.