Get Involved!

Whether you are an individual, patient representative, healthcare professional, student or a company, every effort you make and donation you give to support the rare disease community helps people living with a rare disease!

Choose a section below to find out more about how you can get involved with EURORDIS. 



This page will help you to navigate the different ways that individuals can get involved with EURORDIS activity


Patient groups

If you are a member of, or an advocate for, a patient organisation, here are some ways you can get involved!



See here for the many ways that companies can get involved with EURORDIS.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases