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
USAPfizerKatherine Beaverson (Chair)Executive Director, Head of Patient Advocacy and External Engagement, Rare Disease Research Unit
USAIllumina, Inc.Adriana Huertas-VazquezSenior Director, Global Medical Affairs
USASanofi GenzymeAlaa HamedGlobal Head of Medical Affairs Rare Diseases
USARecursion Pharmaceuticals, IncChris GibsonCEO & Co-Founder
ItalyChiesi Farmaceutici S.p.A.Diego ArdigòHead of R&D, Global Rare Diseases
SwitzerlandUltragenyx Pharmaceutical Inc.Grania CrowleyHead of EU Patient Advocacy and Public Affairs
BelgiumEuropean Federation of Pharmaceutical Industries and Associations (EFPIA)Magda ChlebusExecutive Director Science Policy and Regulatory Affairs
USATakeda PharmaceuticalsMadhu NatarajanHead, Rare Diseases DDU Research
France LysogeneMarie TradChief Medical Officer
China Beijing Genomics Institute (BGI)Ning LiDirector
France InnoSkelSamantha ParkerChief Patient Access Officer
SwitzerlandRocheWaiting for the nomination of the new representative