Events
EUROMAC Teaching course
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
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McArdle Study Day
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
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RD-CONNECT Workshop Data Linkage and Ontologies
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.
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3rd International Summer School on Rare Disease and Orphan Drug Registries
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.
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ExPRESS 2015 Expert Patient and Researcher EURORDIS Summer School
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.
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211th ENMC International Workshop
Development of diagnostic criteria and management strategies for McArdle Disease and related rare glyco(geno)lytic disorders to improve standards of care
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The Rare Disease Day 2015 theme and slogan: Living with a Rare Disease - Day-by-day, hand-in-hand
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.
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2nd IRDiRC Conference - Shenzhen
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
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III International EPIRARE Workshop - Rare disease and orphan drug registries
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.
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McArdle exercise testing workshop, 11 and 12 July, Madrid, Spain
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.
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12 Feb - First Annual Pompe Day
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.
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24 Nov - GSD International
The International GSD Conference 2013 (IGSD13) is a scientific conference for all types of glycogen storage disease (GSD).
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Contact
EUROMAC
Avda. Barcelona nº 174 1º 2ª
08700 Igualada (Barcelona)+34 934 894 054info@euromacregistry.eu
