Activity Report & Action Plan

The following action plan was developed by the Pre-formation Group and presented at launch in Madrid. It is to be revised with the elected Council and with members to adjust to needs and expectations.


  • Adoption and promotion of the Joint Declaration, Rare Diseases: an International Public Health Challenge by all members
  • Publishing subsequent position papers on topic identified by Members as key to global advancement of the rare disease cause
  • Participate in surveys and position papers to shape rare disease policy
  • Supporting the creation of a United Nations Committee on Rare Diseases within the Conference of NGOs with Consultative Relations with the UN
  • Establishing working relationships at the World Health Organization


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

Information & networking

  • Building a strong membership base of more than 100 patient organisations covering more than 100 countries
  • Keeping the rare disease patient community connected through a dedicated website, social media and online discussion group on
  • Organising annual meetings and business meetings
  • Encouraging and facilitating regional networking
  • Learning from each other through a programme of fellowships and exchange among leaders of rare disease patient organisations worldwide


  • Supporting and promoting international research networks and interface with patients
  • Broadening patient representation at the International Rare Disease Research Consortium (IRDiRC)


Developing stable and productive relations with key institutions to design a multi-stakeholder ecosystem for an international rare disease movement, namely with the:

  • International Rare Disease Research Consortium (IRDiRC)
  • International Alliance of Patients’ Organizations (IAPO)
  • International Conference on Rare Diseases & Orphan Drugs (ICORD)
  • International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)
  • Orphanet International
  • International Federation of Human Genetics Societies (IFHGS)

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