Armelle Pindon founded the Plan for Rare Foundation to share her experience as a former scientist and project leader in the pharmaceutical industry with rare disease groups. Armelle’s son has a rare ocular disease, and her father died of rare hematological disease. With her experience from both types of stakeholders, medical research, and patients’ parents, she is interested in bringing her resources to improve patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) in rare diseases. She is focusing on helping patient advocacy groups understand the process of research and drug discovery and have enough knowledge to make appropriate decisions in terms of strategy to promote finding new treatments for their disease. Armelle works on creating engagement and co-learning from patient advocacy groups, scientists, and clinicians to produce an approach more relevant for the patients.

She has a PhD in Neurosciences, with five years of research in academy, followed by seven years in the pharmaceutical industry (Jansen pharma, part of Johnson & Johnson) as a team leader and project leader, before joining the world of nonprofits and foundations.