Events

The goal of this meeting is to mentor the career development of a “hybrid” junior scientist working in developmental disabilities research, including those within T32 training programs as well as other training programs. The focus is on pre- and post-doctoral students (“scholars-in-training”) because interdisciplinary training after scientific formation appears to...
This conference is expected to generate immediate and long-term contributions to clinical care and basic and translational research similar to those generated by previous conferences. Outcomes from previous conferences have dramatically expanded awareness of this disease among physicians and scientists, led to improvements in patient care and new clinical trials,...
The overall objectives of this workshop are to: (1) define NA and NBIA research priorities (2) determine resources that are needed in order to foster research (3) stimulate interest in research into NA and NBIA among scientists in related fields (4) generate collaborations between those working in related disciplines, with...
Advances in ataxia research are occurring at a rapid pace. Given the breadth of pathogenic processes, methods of evaluation, and clinical and basic science approaches that pertain to ataxia research, there is a clear need for a continued forum, namely AIM2010, at which these multifaceted elements of ataxia research can...
Anticipated goals and use of results: Formulation of strategy for advancing clinical research in PAH will be high priority. Recommendations by the participants will be made available via publication in a peer-reviewed journal. Initiatives on future research will be considered.
Specific Aims of this meeting are 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 to present to the LDN community progress on the specific projects that are part...
The goals of the workshop include: 1) Establish a protocol for standardized collection of first and serial neurological and neuropsychological data on FTD patients within the interested ADCs. 2) Establish FTD-specific pathology data elements, and determine whether the ADC pathology protocol addresses these elements, or modification is needed for a...
Registration is now open for the second Bone Marrow Failure Disease Scientific Symposium to be held March 11 – 12, 2010 at the Bethesda Hyatt Hotel in Bethesda, Maryland. The symposium is being presented by the Aplastic Anemia & MDS International Foundation and sponsored by the NIH National Heart, Lung and Blood Institute...
Featuring a stimulating and progressive programme disseminating the most recent research in the field of neuromuscular conditions, this conference will provide an exciting poster session where up and coming researchers will have an opportunity to present their research to the neuromuscular community. for further details
Improving Access to Orphan Drugs for all Patients Affected by Rare Diseases in Europe: EU Assessment of Clinical Added-Value of Orphan Drugs (CAVOD) For more information: article
From 9 to 15 November 2009, CF Europe and CF patient associations in 33 European countries organize the 1st European CF Awareness Week, to fight for a better and longer life for all people living with CF. The CF week aims at making the public aware of CF and making...
The conference will bring together research scientists and clinicians from around the world who specialise in myasthenia, to review the latest developments, exchange experiences and ideas, and broaden knowledge and understanding of this rare disease. A session dedicated to the interaction between clinicians, scientists, and patient associations is also scheduled....
This meeting will bring together specialists from around the world to focus on advances in cell and gene therapy for the treatment of genetic instability disorders. Presentations include gene therapy strategies for rare genetic diseases and discussions of specific disorders such as dyskeratosis congenita and Werner syndrome. for more information
This two-day workshop for scientists and clinicians from academia, medical centers, technology, industry, and government and patient advocates will promote discussion of the various issues and special challenges associated with cancer detection, diagnostics, prognostics, and treatment of rare cancers with high mortality rates. This is an excellent venue to identify...
Partners Healthcare Center for Personalized Genetic Medicine and Harvard Business School hold their fifth annual conference at Harvard Medical School, titled ”Personalized Medicine: The Time is Now,” in Boston November 18-19. To kick off the conference, PMC will host an evening reception for members November 17 at the Commonwealth Hotel....