2009 Flu Info
Swine Influenza (Flu) information.
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NIH Announces Expansion of Rare Diseases Clinical Research Network
The National Institutes of Health announced today a second phase of the Rare Diseases Clinical Research Network (RDCRN) including funds for 19 research consortia. The Rare Diseases Clinical Research Consortia and a Data Management Coordinating Center (DMCC) will be awarded a total of just over $117 million over the next five years. The research conducted with the new funding will explore the natural history, epidemiology, diagnosis, and treatment of more than 95 rare diseases.
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Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Workshop
The Office of Rare Diseases Research, National Institute of Health, is sponsoring a workshop entitled “Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data,” which will be held in the DoubleTree Hotel in Bethesda, Maryland, on January 11-12, 2010. The workshop objective is to discuss the development of an infrastructure for an internet-based platform with common data elements utilizing a federated rare disease registry able to incorporate: • Existing rare disease registries • Patient organizations with no registry looking to establish one • Patients with no affiliation with a support group looking to belong to a registry
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Inborn Errors of Metabolism Workshop Registration Open
On behalf of the planning committee, we are pleased to invite you to the Research Challenges in CNS Manifestations of Inborn Errors of Metabolism Workshop on December 7-8. This new workshop is jointly sponsored by the NIH's Office of Rare Diseases Research (ORDR) and the FDA's Center for Drug Evaluation and Research, Division of Gastroenterology and Inborn Errors of Metabolism Products (DGIP). The goal of the workshop is to bring together those involved in research and investigational treatments for central nervous system aspects of inborn errors of metabolism, and to discuss ways to translate these therapies to clinical trials and beyond.
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Rare Cancers with High Mortality Workshop registration Now Open
NIH Office of Rare Diseases Research-Division of Cancer Prevention (NCI), Workshop Rare Cancers with High Mortality: Challenges for Cancer Prevention and Treatment Bethesda North Marriott Hotel & Conference Center 5701 Marinelli Road, Bethesda, Maryland December 10 - 11, 2009. Aim: The goals of this workshop are to discuss the various issues and special challenges that are associated with cancer detection, diagnostics, prognostics, and treatment of rare cancers with high mortality rates. This is an excellent venue to identify strategies to improve screening and detection that may lead to prevention and better treatments for these rare cancers. This workshop will also facilitate scientific collaborations and interactions, examine new technologies, and build new research programs in this emerging field. Organization: Two-day workshop for ~200 scientists, and clinician from academia, medical centers, technology, industry, government and patient advocates.
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