Samantha Parker | Patient Advocacy and Communication Lead Rare Diseases
Italfarmaco

Samantha Parker is Patient Advocacy Lead at Italfarmaco and Vice Chair of the International Rare Disease Research Consortium. She has over two and a half decades of international rare disease experience in the biopharmaceutical industry. She has a proven track record in patient advocacy, small molecules, gene therapy development, natural history studies, registries, novel patient-centered outcomes, healthcare education and collaborative networks. At IRDiRC, Sam is currently involved in task forces set up to better understand the complexity of funding for rare disease research and motivating factors for organisations to invest.  Sam is an adamant believer that patients should be at the front and center of rare disease research and development. She has been among the thought leaders of academic-patient-industry collaboration from the early 2000s which led her to become involved in policy making for rare diseases and she served on the EU committee of experts in rare diseases. She was involved in the coordination in four of the pilot European Reference Networks for Rare Diseases. This experience has shaped her role as Patient Advocacy lead at Italfarmaco SpA, which is to ensure that the patient is at the centre of everything the company does. Italfarmaco recently launched its rare disease unit, with a treatment now approved by the FDA for Duchenne muscular dystrophy.