According to Orphanet, people with rare diseases are more psychologically, socially, financially and even culturally vulnerable, particularly because their challenges have to do with being able to access quality healthcare, comprehensive social and medical support, effective liaison between the hospital and general practice, as well as social and professional integration and autonomy.
Innovative technologies could be particularly beneficial for people with rare diseases, but the rarity of the disease can create strategic difficulties. In your view, how should we balance the high costs of research and treatment of low-impact and low-prevalence diseases and the great need experienced by this small patient population.