The association's director, Marian Corral, travelled to the Canary Islands to take part in the forum "Rare diseases, a challenge for everyone" organised by the CajaCanarias foundation at the Espacio Cultural CajaCanarias in Santa Cruz de Tenerife.
The meeting was presented and moderated by Antonio G. Armas, director of the radio programme Enfermedades Raras, and included speeches by Juan Carrión, president of FEDER, María del Carmen Hernández, president of ADERIS (Association for Disability, Rare Diseases and Social Integration) and Marian Corral, presenting the association.
During her speech, Marian explained to the audience what an orphan drug is, the current situation of these treatments in Spain and the challenges that we have to face as a country. These include: ensuring fairness in diagnosis and access to treatment for Spanish patients, developing an agile and clear process to reduce funding deadlines, having greater certainty and consensus in the evaluations to improve the situation, establishing a real collaboration between all parties involved to find a joint solution capable of improving access for all patients in our country, and preventing this situation from discouraging the arrival of new therapies in Spain, thus harming patients' access to new medicines available on the European market.
During the meeting, an institutional declaration was read out to vindicate the humanisation of health.
