Courage & Strength – EU Commitment with Rare Diseases

In this session the focus is on Epidermolysis bullosa (EB) with the organization DEBRA Piel Mariposa as well as families and individuals affected. Looking into how key medication, approved at EU-level , can make its way as soon as possible towards those that need it. We will listen to the real experiences of living with a rare disease, reflecting on support and personal growth, while also exploring the need to implement new developments and health improvements across Member States with a human-centered efficiency.