Rare Diseases International Actions


  • Maintenance a Rare Diseases International website with basic information about the initiative and a listing of all member associations
  • Distribution of a brochure on Rare Diseases International, to inform existing members and recruit new ones.


  • Maintenance and moderation of a Rare Diseases International mailing list to include all contacts in member organisations for an efficient exchange of information
  • Organisation of regular Rare Diseases International Meetings, back to back with existing conferences such as the IRDiRC conference in 2014.
  • Encourage and facilitate regional networking e.g. IberoAmerican Alliance or Pan-Asia Alliance
  • Encourage and facilitate capacity building of members e.g. Short-Term Exchange & Internship Capacity Building Programme between member organisations


  • Promotion of Rare Disease awareness worldwide through active participation in and the promotion and expansion of International Rare Disease Day


  • Development and adoption of a Joint Declaration “Rare Diseases: an International Public Health Challenge”
  • Potential drafting of position papers at the initiative of any member organisation
  • Introduce Rare Diseases International to International multilateral organisations such as the United Nations Economic and Social Council (ECOSOC) and the World Health Organisation (WHO)


  • Coordination between Rare Diseases International member organisations with respect to participation in the International Rare Diseases Research Consortium (IRDiRC)


  • Partnership with Orphanet
  • Partnership and coordinated liaison with the International Association of Patient Organisations (IAPO) for conferences, policy and WHO liaison
  • Coordination between Rare Diseases International member organisations with respect to the participation in International Conference on Rare Diseases and Orphan Drugs (ICORD)
  • Introduce Rare Diseases International to IFPMA, ESHG

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.European Conference on Rare Diseases 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