Partners Around the World

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

International partnerships with patient organisations

In recognition of the need to unite, expand and reinforce the rare disease movement of patient organisations and patient advocates around the world, EURORDIS has established concrete partnerships with common objectives. EURORDIS signed a Memorandum of Understanding with the US National Organization for Rare Disorders (NORD) in 2009, the Canadian Organization for Rare Disorders (CORD) in 2012, the Japan Patients Association (JPA) in 2013, Rare Voices Australia (RVA), the Russian Patients Union (RPU) in 2015, the Rare Disease Foundation of Iran in 2016, and the Chinese Organisation for Rare Diseases (CORD) in 2018.

The Memorandums of Understanding are part of the ongoing effort to stress the international dimension of the rare disease movement and the global benefits to be gained by collaboration and enhanced cooperation with partners. The Memorandums of Understanding specify the common objective to strengthen the united international voice of rare disease patients and promotes a global approach through participation in the annual awareness-raising event Rare Disease Day, international patient forum RareConnect, Rare Diseases International, and other possible joint actions such as common position papers and collaboration in diverse areas including research, diagnostics, information, treatment, and quality of life.

The Memorandums of Understanding reiterate the willingness of national umbrellas of rare disease patient organisations to collaborate globally in order to gain mutual benefits as much as to promote rare diseases as an international health policy priority. 

EURORDIS hopes to continue developing partnerships with rare disease associations throughout the world.


Page created: 15/10/2014
Page last updated: 23/10/2018
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. 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