We are organizing a EUROMAC TEACHING COURSE - Study Day (Warsaw - Poland). SAVE THE DATE and join us! It will be held the 13th May 2016
We are organizing a FREE OF CHARGE McArdle Study Day (Belgrade - Serbia). SAVE THE DATE and join us! It will be held the 27th February 2016
The RD-Connect Workshop program will allow attendants to learn new concepts and tools for applying ontologies to their data and make them interoperable with other data coming from different sources.
This year the program of the International Summer School will be focused on the specific aims and needs of registries oriented to clinical research, comprising the study of the natural history of diseases and the assessment of treatment effectiveness.
The 2015 version of the Summer School will be held from 1-5 June, 2015 in Barcelona, Spain. Expert patient representatives, researchers and trainers from patient organisations, research institutes and the European Medicines Agency will join together.
Development of diagnostic criteria and management strategies for McArdle Disease and related rare glyco(geno)lytic disorders to improve standards of care
The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the patients, families and caregivers who are impacted by rare diseases. The slogan Day-by-day, hand-in-hand evokes the solidarity between families, patient organisations and communities.
The second conference organized by the International Rare Diseases Research Consortium (IRDiRC) in collaboration with the BGI is gathering stakeholders active in the field of rare disease from across the globe. It will be held on 7-9 November 2014
Istituto Superiore di Sanità, Rome (Italy), November 24-25, 2014 Patient registries are key tools in rare disease research and are now the subject of unprecedented popularity in translational research and of extensive policy actions.
The workshop is organized within the framework of the European project EUROMAC, a European registry for McArdle Disease and very rare muscle glycogenolytic disorders. The EUROMAC workshop aims to improve the evaluation and care of people with McArdle disease.
Pompe Disease robs us of our physical strength and abilities. But despite our physical weaknesses, I believe that we have a great strength as a Community. As a united community of patients, family, friends, physicians, scientists, and industry we have an undeniable strength.
The International GSD Conference 2013 (IGSD13) is a scientific conference for all types of glycogen storage disease (GSD).
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