International activities

EURORDIS is attracting an increasing number of patient organisations outside of Europe and is gaining traction at promoting rare diseases at the international level. Our vision is to unite, expand and reinforce the rare disease movement of patient organisations and patient advocates around the world.


EURORDIS' international initiatives are supported in 2022 by


Chiesi logo         CSL Behring logo         Everylife Foundation for Rare Diseases logo         Horizon Therapeutics logo         Janssen logo         PTC Therapeutics logo       Roche logo         Swedish Orphan Biovitrum (SOBI) logo         Takeda logo         Vifor Pharma logo         



European Joint Programme for Rare Diseases

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.


Rare Barometer Programme

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.


EURORDIS Open Academy

The EURORDIS Open Academy brings together all EURORDIS trainings with the goal of building the capacity of rare disease patient advocates.


Rare Disease Day

Held on the last day of February, Rare Disease Day is an annual international awareness-raising event coordinated by EURORDIS


RareConnect, the online network for rare disease communities, brings together patients, families, and groups from around the world who might otherwise be isolated


Rare Diseases International

RDI is a network of rare disease patient organisations and advocates interested in building the global alliance of rare disease patients and families across the world


NGO Committee for Rare Diseases

The NGO Committee for Rare Diseases engages at the UN level to elevate rare diseases to a priority within global public health.


Global Commission To End The Diagnostic Odyssey For Children With A Rare Disease

The Global Commission is a group of multidisciplinary experts with the goal of achieving timely diagnosis for all rare diseases, especially those affecting children.



The International Rare Diseases Research Consortium (IRDiRC) fosters international collaboration in rare disease research


Partners Around the World

Over the years, EURORDIS has attracted a growing number of patient organisations beyond Europe.


International rare disease events

Check out the latest international rare disease events

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