EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
RareConnect, a EURORDIS initiative, is an online network of rare disease communities to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
Rare Barometer Voices, a EURODIS Initiative, is a community of people living with a rare disease who are willing to participate in EURORDIS surveys and studies. All of the information shared is completely confidential and anonymous and is used only to create a collective analysis.
Orphanet is a reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care, and treatment of patients with rare diseases.
Launched in 2014 and supported by the Bank of Valletta (BOV), The Marigold Foundation offers valuable support wherever it is needed. The objective is to positively empower people and to work with them to raise standards, support initiatives, and strengthen voices.