Are you a professional working in the health sector? Do you want to find out more about the registry and the dieases that will be included in our joint effort? 

We have summarized in a printer-friendly PDF all you need to know about the project, who we are, and that you need to do in order to take part in this registry. 

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

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.

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 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 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 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.