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12th International symposium on MPS and related diseases, Noordwijkerhout, the Netherlands, from 28 June to 1 July 2012.
This symposium aims to allow exchanges between patients, parents, families, doctors and scientists on all aspects of mucopolyssaccharidosis and related disorders. Families will not only have opportunities to meet peers from other countries, but will be able to attend sessions on optimizing care, dealing with clinical issues and surgery in MPS, and ‘living fully with MPS’. Scientific sessions will focus on musculoskeletal disease and MPS, the brain and MPS, and new approaches to treatment.
Programme and registration on http://www.mps2012.eu
French Fondation de cooperation scientifique Maladies Rares was officially launched
On the occasion of the Rare Diseases Day 2012, the French Fondation de cooperation scientifique Maladies Rares was officially launched. During the press conference, Nora Berra in charge of Health welcomed the new structure as "a model of multidisciplinary and interdepartmental cooperation. It is a strike force to advance research."
"Research is still suffering from lack of coordination on sources and use of data, and from fragmentation of the research teams and research programs. These weaknesses are mainly due to the dispersion of structures dedicated to rare diseases, "said Prof. Nicolas Levy, director of the Foundation.
Partners are multiple : French Association Against the Myopathies - a major-league player in France's rare disease field and organisers of the country's famously successful Telethon; national medical and health research organisation INSERM; the Conference of General Directors of the University Hospitals and the Conference of Presidents of the University.
The foundation will act with all public and private actors because the objective is to bring together all the skills in the fight against these diseases.
See the website : http://fondation-maladiesrares.org/
Rare Didease Day 2012 : "Rare but strong together"
In its fifth year, Rare Disease Day will seek to draw attention to the importance of solidarity. Solidarity and collaboration amongs patients, families, all stakeholders and at global level. Many events will take place in over 50 countries. More information on the dedicated website www.rarediseaseday.org