The International Association of Relatives and People Affected by Lipodystrophies (AELIP) participated in the 9th International Congress on Orphan Drugs and Rare Diseases held from 13 to 15 February in Seville under the theme "Rare diseases, a global challenge". This forum was organised by the Royal and Illustrious Official College of Pharmacists of the Province of Seville, the Spanish Federation of Rare Diseases (FEDER), the Orphan Drugs and Rare Diseases Foundation of Seville (MEHUER) and the FEDER Foundation.
Representatives from the socio-health sector, the pharmaceutical industry and patients took part in this meeting, whose objective was to provide information about the reality of rare diseases and their treatments.
Various challenges were addressed, such as access to the most innovative treatments and their financing methods, achieving a diagnosis or the health and social impact. In addition, it has served to raise challenges such as obtaining strategies for the care of rare disease patients at the international, national and regional levels.
The congress included six round tables that served to address different issues of interest such as access to drugs for rare disease patients, advances in research on orphan drugs, research strategies for rare diseases or European networks of rare diseases.
In addition, socio-health needs in rare diseases were raised and the development of a common policy for rare diseases and undiagnosed cases was discussed.
D'Genes was represented by its President, Naca Eulalia Pérez de Tudela, and its Vice-President, Juan Carrión.
