Become an Umbrella Patient Advocacy Member

The International Rare Diseases Research Consortium (IRDiRC) was launched in 2011 to advance rare diseases research worldwide. It unites national and international governmental and non-profit funding bodies, companies (including pharmaceutical and biotech enterprises), umbrella patient advocacy organizations, and scientific researchers to promote international collaboration and contribute towards IRDiRC objectives. Importantly, the coverage of the Consortium is global and involves stakeholders from Africa, Asia, Australia, North America, and Europe.

IRDiRC has long recognized the importance of the involvement of patient representatives in its activities and, thus, membership includes umbrella organizations of patient advocacy groups focusing on the involvement of affected individuals and their families in rare diseases research, with a strong emphasis on partnerships with all stakeholders in all relevant aspects of research. IRDiRC welcomes membership applications from umbrella patient organizations that:

  • Represent broad patients’ interests for all rare diseases in at least one country or larger area, and
  • Contribute to research that shares and will advance the IRDiRC Vision and Goals (e.g., developing and providing tools to accelerate research, diagnostic and therapeutic development, evaluation of processes)


  • IRDiRC actively seeks organizations from non- or under-represented geographical regions due to the critical importance for IRDiRC to be representative of the global rare disease community
  • IRDiRC recommends that the organization nominate a representative who has direct experience with a rare disease and worked in the interest of patients for at least a year

Umbrella patient organizations accepted as members will also actively contribute as members of the Patient Advocacy Constituent Committee (PACC). We strongly encourage applicants to read the PACC purview and mission.

Benefits of the consortium membership include:

  • Access to an international network of stakeholders active in the field of rare disease
  • Representation on the Consortium Assembly and Constituent Committees
  • Participation in a Scientific Committee and/or Task Force, according to expertise
  • Involvement in setting out policies, guidelines, and recommendations
  • Information sharing on the State of Play in rare diseases research
  • Skill and expertise sharing to advance translational, pre-clinical, and clinical research

Ultimately, all this will help:

  • Avoid duplication of effort through co-operative discussion
  • Cost saving through knowledge and resource sharing
  • Accelerate diagnoses and therapy development for rare diseases
  • Advance the care and the cure of rare disease patients
  • Maximize the impact of investment in rare diseases research

To apply to become a member, please submit (addressed to scientificsupport [at] irdirc [dot] org) and sign a Letter of Intent (LOI — see below) and provide a separate Letter of Motivation (LOM) stating your organization’s reasons for desiring to join IRDiRC and the explicit contributions your organization will bring to IRDiRC. We ask that you answer the following specific questions in the LOM:
Template of Letter of Intent:

  1. Why does your organization want to join IRDiRC?
  2. How does your organization contribute to research on rare diseases?
  3. What will your organization specifically contribute to IRDiRC to help advance IRDiRC’s vision, goals, and activities?

Template of Letter of Intent:
For umbrella patient advocacy organizations: LOI-Patient-Advocacy-Membership-2022