Patient Advocates Constituent Committee (PACC)

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.