Biography:
Marta De Santis is a senior researcher at the Istituto Superiore di Sanita (ISS) and coordinator of the National Helpline for Rare Diseases at the National Centre for Rare Diseases. She participates - nationally and internationally - in studies and initiatives on the social burden and quality of life of people with rare diseases (or disabilities) and their families and caregivers. She is involved in several European projects (e.g. EUROPLAN, CLOSER, EJP RD, JARDIN, ERDERA, etc.) and national activities in the field of research, information, patient empowerment and communication. She is the author of books and popular and scientific publications.
Title : The person, not the disease: emotional and social aspects of rare diseases