Doctor Carlos Casasnovas, a researcher at IDIBELL and neurologist at Bellvitge Hospital, explained that the rarity of these conditions often leads to a lack of specialized professionals. This scarcity of knowledge directly impacts the development of new treatments and clinical research.
“"In an ideal world, these kinds of days should not exist, as these diseases should be perfectly known and treated."
These diseases form a very heterogeneous group, appearing in both children and adults. Because they affect fewer people, securing private or public funding for research is significantly more difficult than for prevalent diseases, making institutional support crucial.
Casasnovas emphasized that being rare does not mean being incurable. While some are degenerative, many have effective treatments. The expert stressed that a multidisciplinary approach involving dietitians, physiotherapists, and social workers is vital for patient care.
