Companies Constituent Committee (CCC)

The IRDiRC Companies Constituent Committee (CCC) brings together representatives from the for-profit pharmaceutical and biotech members of IRDiRC.
The CCC identifies common – often recurring and resource-consuming – roadblocks to efficient execution of rare disease research in the company space and promotes collaborations on “zero” or pre-competitive aspects of research as well as development.
Within these broad areas, a number of potential activities were identified by the CCC, including the need for a natural history and registry platform for the collection of real-world evidence data to support more efficient therapeutics development.
In order to work towards the IRDiRC therapies and access goals of 2027, the CCC will also investigate how to transform science to accelerate clinical development and translate innovation into sustainable access to medicines.

CountryOrganization RepresentativeTitle
Belgium SanofiVinciane Pirard (Chair)Lead Scientific Advocacy and Insights - Global Medical Affairs Rare Diseases
USAIllumina, Inc.Adriana Huertas-Vazquez (Vice Chair)Senior Director, Global Medical Affairs
USAPfizerDenis KeohaneVP Global Global Medical Affairs in Rare Disease
ItalyChiesi Farmaceutici S.p.A.Diego ArdigòHead of R&D, Global Rare Diseases
Denmark UCBGabriella AlmbergGlobal Head Policy & Public Affairs, Rare Disease Organisation
USARecursion Pharmaceuticals, IncJeanene Fogli Head of Patient Advocacy and External Collaboration
JapanTakeda PharmaceuticalsLaura Rosen Head, Neuroscience Translational Medicine
USABiogenLewis Raynor Director Epidemiology
BelgiumEuropean Federation of Pharmaceutical Industries and Associations (EFPIA)Magda ChlebusExecutive Director Science Policy and Regulatory Affairs
China Beijing Genomics Institute (BGI)Ning LiDirector
France ITALFARMACOSamantha ParkerPatient Advocacy and Communication Lead Rare Disease Europe
Sweden Alexion AstraZeneca Rare DiseaseWendy Erler Vice President of Patient Experience, STAR and Advocacy
SwitzerlandRocheWaiting for the nomination of the new representative
SwitzerlandUltragenyx Pharmaceutical Inc.Waiting for the nomination of the new representative