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.
Events
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 first symposium organized by the EUROMAC consortium will gather stakeholders active in the field of muscle glycogenosis from across the globe.
It will be held the 1st April 2016 - London
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.
The workshop titled 'Development of diagnostic criteria and management strategies for McArdle Disease and related rare glyco(geno)lytic disorders to improve standards of care', was organised in collaboration with the EUROMAC consortium. The workshop aimed to agree diagnostic criteria for these rare disorders, best practice for management to improve standards of care in McArdle disease and to plan a strategy for future international clinical trials.
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.
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 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