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.

CountryOrganization RepresentativeTitle
CanadaRare Diseases International (RDI)Durhane Wong-Rieger (Chair)Chair of the RDI Council
GhanaRare Disease Ghana Initiative (RDGI)Samuel Agyei Wiafe (Vice Chair)Founder/Executive Director
USAGlobal GenesCharlene Son RigbyCEO
BotswanaBotswana Organization for Rare Diseases (BORDIS)Eda SelebatsoFounder & Chairperson
Canada Canadian Organization for Rare DisordersJida El HajjarBoard member
PeruIberoamerican Alliance for Rare Diseases (ALIBER)Karla Ruiz de CastillaSecretary of ALIBER and President of ESPERANTRA
South AfricaRare Diseases South AfricaKelly du PlessisCEO & Founder
China Chinese Organization for Rare Disorders (CORD)Kevin HuangFounder & President
RwandaCentre-Alliance for Rare Disease in Rwanda Manzi NdamukunzeConsultant
AustraliaRare Voices AustraliaNicole MillisExecutive Officer
USA National Organization for Rare Disorders (NORD)Pamela GavinExecutive Vice President
Peru Federación Peruana de Enfermedades RarasPilar Estremadoyro ReyesVice-President
IndiaOrganization for Rare Diseases India (ORDI)Prasanna Kumar ShirolFounder, Director Board
IndiaIndian Organization for Rare Diseases (IORD)Ramaiah MuthyalaPresident and CEO
USA Genetic AllianceSharon TerryPresident and CEO of Genetic Alliance, President of EspeRare
CanadaGlobalSkinTammi ShipowickProgram Director
France EURORDIS-Rare Diseases EuropeVirginie HivertTherapeutic Development Director
JapanAdvocacy Service for Rare and Intractable Diseases’ multi-stakeholders in Japan (ASrid)Yukiko NishimuraPresident
SingaporeAsia Pacific Alliance for Rare Disease Organisations (APARDO) Waiting for nomination of new representative