The IRDiRC Patient Advocacy Constituent Committee (PACC) is comprised of the leadership from umbrella patient advocacy organizations that represent a large region or country and have a focus on rare disease research.
The role of the PACC, and hence each Patient Advocacy Group IRDiRC member, is to actively contribute to the IRDiRC global vision, goals, and set of actions that will accelerate diagnostic and therapeutic development and deployment for all rare diseases.
The PACC addresses systemic issues that apply to all members and all rare diseases, such as:
- Articulates points in the diagnostic and therapeutic development process where patient involvement is crucial
- Measures the success and impact of that patient involvement (particularly in areas contributory to the IRDiRC goals),
- Focuses on patient group deliverables that demonstrably advance the goals and activities of the other IRDiRC constituencies and the Consortium as a whole.
Example topics that the PACC tackles: the science of patient engagement, registries, access, cross-stakeholder interactions, and the development of tangible tools, paradigms, and approaches to advance the IRDiRC goals from a patient involvement perspective. The PACC aims to harness the successes of member groups, improve the playing field for all, and work together to reach equity across the world.
| Country | Organization | Representative | Title | |
|---|---|---|---|---|
| Canada | Canadian Organization for Rare Disorders |  | Durhane Wong-Rieger (Chair) | President |
| Ghana | Rare Disease Ghana Initiative (RDGI) |  | Samuel Agyei Wiafe (Vice Chair) | Founder/Executive Director |
| USA | Global Genes |  | Charlene Son Rigby | CEO |
| Botswana | Botswana Organization for Rare Diseases (BORDIS) |  | Eda Selebatso | Founder & Chairperson |
| Sweden | Wilhelm Foundation |  | Helene Cederroth | Founder |
| Canada | Canadian Organization for Rare Disorders |  | Jida El Hajjar | Board member |
| Peru | Iberoamerican Alliance for Rare Diseases (ALIBER) |  | Karla Ruiz de Castilla | Secretary of ALIBER and President of ESPERANTRA |
| South Africa | Rare Diseases South Africa |  | Kelly du Plessis | CEO & Founder |
| China | Chinese Organization for Rare Disorders (CORD) |  | Kevin Huang | Founder & President |
| Rwanda | Centre-Alliance for Rare Disease in Rwanda |  | Manzi Ndamukunze | Consultant |
| Australia | Rare Voices Australia |  | Nicole Millis | Executive Officer |
| USA | National Organization for Rare Disorders (NORD) |  | Pamela Gavin | Executive Vice President |
| Peru | Federación Peruana de Enfermedades Raras |  | Pilar Estremadoyro Reyes | Vice-President |
| India | Organization for Rare Diseases India (ORDI) |  | Prasanna Kumar Shirol | Founder, Director Board |
| India | Indian Organization for Rare Diseases (IORD) |  | Ramaiah Muthyala | President and CEO |
| USA | Genetic Alliance |  | Sharon Terry | President and CEO of Genetic Alliance, President of EspeRare |
| Canada | GlobalSkin |  | Tammi Shipowick | Program Director |
| France | EURORDIS-Rare Diseases Europe |  | Virginie Hivert | Therapeutic Development Director |
| Japan | Advocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan (ASrid) |  | Yukiko Nishimura | President |
| Singapore | Asia Pacific Alliance for Rare Disease Organisations (APARDO) | Waiting for nomination of new representative |