“Nothing about us, without us”- James Charlton
Patient, family members and patient advocacy groups refused to be passive victims by welcoming and supporting any initiative to the rare disease landscape that are seriously committed to developing safe, effective treatments for patients. Due to the specificities of rare diseases, patients and family members are amongst the most active drivers to foster awareness, education and research.
This section aims at liaising all stakeholders and at being a vehicle to promote collaborative work. A complete directory of CDG patient advocacy groups as well as local patient representatives is offered.
