Workshop goals are to (1) determine the appropriate human, animal, or cell-based models to better understand this correlation; (2) explore the mechanisms and/or pathways involved; and (3) establish international collaborations to enhance progress in the field and to make recommendations for future study.
Events
Themes of ECRD 2010 1. National strategies and plans for rare diseases 2. European Reference Networks and Centres of Expertise for Rare Diseases 3. Science from the bench to the bed side 4. Information and Medical Education 5. The European Committee for Rare Diseases 6. Policy scenarii for rare...
The goals of this workshop are to (1) assess the state of knowledge regarding the musculoskeletal aspects of aging with OI; (2) explore the potential for new diagnostic and therapeutic techniques for OI; and (3) build a consensus on essential measures for documenting OI treatment outcomes.
For the first time, ICORD — the International Conference on Rare Diseases and Orphan Drugs — will be convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities. For information and registration please visit the Conference Web Site.
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 effectiveness of this workshop will be assessed by tracking the number of collaborations established between investigators and incorporation of these investigations into clinical protocols. The number of objectives relating to osteonecrosis in future ALL protocols will be tracked and could impact quality-of-life issues and cancer survivorship. The incidence of...
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
For more information: www.institutocanguru.org.br
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...
For the first time the International Society of Neonatal Screening and the Latin American Society of Inborn Errors of Metabolism join forces to host the seventh International and Latin American Congress on Inborn Errors of Metabolism and Neonatal Screening, an academic event aimed to foster the interchange of new ideas...
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....
Topics include: Rehabilitation of children; rehabilitation of adults; assessments of motor functions; orthoses/mobility aids; and international experiences. for more information