IDIBELL, supporting rare disease research

The Bellvitge Institute of Biomedical Research (IDIBELL) has endorsed the document of recommendations for finding solutions in the field of rare diseases, an initiative promoted by the Spanish Federation for Rare Diseases (FEDER) and the Spanish Association of Orphan and Ultraorphan Drug Laboratories (AELMHU) through which the government is requested to implement measures to improve the quality of life of the three million affected by a rare disease.

The recommendations document proposes measures to seek joint solutions to the problems affecting the group of rare diseases (RD) in our country, such as promoting general knowledge on rare diseases; supporting research, promoting the viability and sustainability of laboratories investigating rare diseases; achieving rapid and equitable access to diagnosis and appropriate treatment in the different CCAA, providing the necessary funding for each drug; and avoiding delays in decisions on financing and price of orphan drugs.

Together with IDIBELL, there are 29 entities endorsing the document, which is to be forwarded to the Ministry of Health, Social Services and Equality. In this line, IDIBELL has also initiated a partnership with the web "The Retto" to explain and raise awareness of Rett syndrome, a rare disease that affects one in every 10,000 girls and that is investigated at IDIBELL by Dr. Sònia Guil’s group.