We pursue cooperative strategies to combine our resources and capabilities with those of others international bodies, in order to raise awareness on rare genetic disease problem and importance of funding quality research.
We have joined international projects:
IRDiRC, International Rare Diseases Research Consortium
A global initiative promoting international collaboration in research with the aim of ensuring that all people with rare diseases receive accurate diagnosis, care, and available therapies within one year of medical attention.
ENMC, European Neuromuscular Center (dal 1992)
An international center active since 1992 to facilitate communication and collaboration in the field of neuromuscular clinical research through workshops and conferences. It is a model for how to involve patient organizations in research.
European Partnership for Personalised Medicine (EP PerMed)
It brings together around 60 partners from 25 countries with the aim of improving Europe's competitiveness in the field of personalized medicine. It was developed as part of the global initiative International Consortium for Personalized Medicine (ICPerMed).
European Rare Diseases Research Alliance (ERDERA)
Continuation of the European Joint Programme for Rare Diseases (EJP-RD), bringing together over 180 European organizations with the aim of making Europe a world leader
in rare diseases, improving prevention, diagnosis, and treatment.
Europe PMC
A platform that collects and makes available all global publications on life sciences.
TREAT-NMD Alliance
Global network of neuromuscular disease experts aimed at accelerating the worldwide
development of effective diagnostic practices and treatments for these diseases, including through the creation of infrastructures such as biobanks, patient registries, and standard operating procedures.
ARM, Alliance for Regenerative Medicine
International advocacy organization that involves companies, research institutes, patient organizations, and other players in regenerative medicine to promote health policies, including international ones, and practices for advanced therapies.
Undiagnosed Diseases Network International
An international partnership that brings together programs created to provide answers to patients with undiagnosed diseases and their families.
