Supporting Research at the International Level
The Foundation plays an active role in research and health policy in the field of rare diseases, both nationally and internationally.
Partner of the RD-Connect Consortium
A unique global infrastructure project that links databases, registries, biobanks and clinical bioinformatics data used in rare disease research.
Member of the Executive Committee of the International Consortium for Rare Disease Research
This Consortium (IRDiRC) brings together national and international governmental and non-profit funding agencies, companies (including pharmaceutical and biotech companies), patient advocacy organizations and research scientists to promote international collaboration and advance rare disease research worldwide.
Erasmus + "The value of facing school: the inclusion of youth with neuromuscular diseases, muscular dystrophies and other rare diseases in education
As part of its mission to raise awareness of rare diseases on a European scale, the Foundation took part in the Erasmus + program "The value of facing school: the inclusion of youth with neuromuscular diseases, muscular dystrophies and other rare diseases in education" coordinated by the Fundación Isabel Gemio in 2022.
The main objective of this program is to create a cooperation of the institutions involved with the aim of changing the teaching methods to improve the care and integration at school of students with muscular dystrophies and, more generally, with a rare disease.
In this context, the Foundation is in charge of coordinating the PR2 "Facing muscular dystrophies and other rare diseases in school" which aims to provide content and exercises for teachers, parents and school children.