For another year, the Confederació Mundial de Penyes del FC Barcelona, through its CSR Subcommittee, has joined the institutional declaration of the Spanish Federation for Rare Diseases (FEDER) on the occasion of the World Day for Rare Diseases, which is commemorated today, 28th February. This year, the institution wanted to focus this day on all those people who live with each rare disease, whether they are patients, their families, health professionals, caregivers or researchers. In this way, FEDER wants to give special visibility to these people and prevent them from feeling alone.
The Spanish Federation of Rare Diseases is chaired by Juan Carrión, who is also president of the Federación de Peñas Barcelonistas de Murcia and the Peña Barcelonista de Totana. Precisely, this penya has recently carried out several actions in the Murcia Penitentiary Centre I and in the Guillermo Miranda Social Insertion Centre, where it has raised awareness among the inmate population about the needs linked to rare diseases. In addition, over the course of the year, the FC Barcelona supporters’ clubs regularly collaborate in different actions to raise awareness of these illnesses, thus underlining the values of solidarity that define this movement.
Research, early diagnosis and access to medicines
As FEDER calls for in its institutional declaration, the fight against rare diseases requires progress in three areas in particular. Firstly, tax incentive systems are needed to promote research and investigation into these pathologies; secondly, resources must be dedicated to the early and accurate diagnosis of these diseases; and thirdly, access to medicines must be fast and fair compared to other diseases. FEDER also stresses the importance of social care in all these cases.
Rare diseases, or low prevalence diseases, are those for which 5 or fewer cases have been diagnosed per 10,000 inhabitants. Currently, it is estimated that between 6 and 8% of the world’s population lives with these pathologies, which is equivalent to around 3 million people in Spain and more than 300 million worldwide. The number of rare diseases identified today exceeds 6,400.
