History

The idea to connect existing rare disease patient organisations addressing specific rare diseases or working as a national umbrella, was present in the mind of many leader patient advocates around the world but no one had the capacity to do it.

Since 2009, EURORDIS has signed agreements, with national rare disease alliances around the world that included common objective to create an international movement of rare disease patients. With NORD (USA) in 2009, CORD (Canada) in 2012, JPA (Japan) in 2013, RPU (Russia) and RVA (Australia) in 2015.

In 2009 EURORDIS included as a high priority in its five-year strategy 2010-2015 that Rare diseases become an international movement and gain visibility and influence in international instances. In March 2012, the EURORDIS Board of Directors adopted the proposal to create a Rare Diseases International network to expand the movement of rare diseases internationally, provide mutual support between patient organisations and be able to speak with one voice. By doing that, EURORDIS commits to pledge seed resources, particularly staff resources (governance, membership, public affairs, management of RDI) and financial resources to enable the meetings.

The concept of RDI was presented at ICORD Tokyo 2012. Participants shared a strong sense that it was time to take action at the international level and the expectation that EURORDIS should be the enabler of RDI.

In 2013, in consultation with international partners such as the Canadian Organization for Rare Disorders (CORD) and the International Alliance of Patients’ Organisations (IAPO), EURORDIS developed a survey, disseminated to over 100 participants, to determine the level of interest of rare disease patient organisations in international affairs. 64 respondents from 37 countries around the world were overwhelmingly in favour of the creation of a RDI initiative, with 98% replying that they would be interested in joining.

The results of this international survey were used to draft the Joint Declaration: Rare Diseases as an International Public Health Priority, which encapsulates the main advocacy messages of RDI.

Throughout 2014, RDI was discussed and was progressively shaped with key leaders of the patient community and presented at several conferences including the US National Organization for Rare Diseases (NORD) regional meeting in Alexandria, Virginia in October 2014.

In November 2014 a group of rare disease patient advocates attending the International Rare Disease Research Consortium (IRDiRC) Conference in Shenzhen, China met at an RDI inception meeting and volunteered to become part of the first RDI Steering Committee, known as the Pre-formation Group.

RDI was later presented to representatives from the pharmaceutical and biotech industry at the EURORDIS Round Table of Companies workshop in Brussels in February 2015 calling industry to organise itself to be able to speak with one voice at global level on rare disease therapies.

RDI was officially launched on May 28, 2015 at an inaugural meeting held alongside the EURORDIS Membership Meeting in Madrid, Spain.



 
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 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