The president of the Assembly of Extremadura, Blanca Martín, closed on Friday, March 2, the institutional event on the occasion of World Rare Disease Day, organized by the Spanish Federation of Rare Diseases in Extremadura (Feder).
The event began with the testimony of Purificación Zambrano, president of the Extremadura Association of Retinitis Pigmentosa and founder of the Federation of Retinitis Pigmentosa Associations of Spain (Farpe), who narrated her experience as a person affected with this disease in an intervention under the title ‘Living with a rare disease’. Next, Noemí González, a young woman with Apert Syndrome, played several pieces of music on the piano.
There were also interventions by the Minister of Health and Social Policies, José María Vergeles; the mayor of Mérida, Antonio Rodríguez Osuna, and the president of Feder Extremadura, Modesto Díez.
The president of the Assembly defended that “the voice of the citizens is the one that should be heard here,” in reference to the regional Chamber. Furthermore, she joined Feder’s demands, because “without research there is no future and without research there is no solution.”
Díez, for his part, recalled that the federation represents “a dozen associations and more than 21,000 people diagnosed with a rare disease in the region.” Furthermore, he pointed out that the main problem for people with this type of disease is access to diagnosis and treatment. “Almost 50% of those affected in our country have suffered a delay in diagnosis, in many cases more than ten years, and without diagnosis there can be no treatment,” he explained.
In his speech, Vergeles offered a presentation on ‘Research and rare diseases in Extremadura Health’, in which he took stock of the study of this type of diseases in the regional health system.
In this sense, the counselor recalled that “there are between 6,000 and 8,000 diseases considered rare in Extremadura” and stated that “research into rare diseases in Extremadura is very consolidated, not only in the clinical aspect, but also in the care provided to people.” with rare diseases and their families and in the research of new techniques.”
Next, Rodríguez Osuna opted for the collaboration of public administrations to guarantee investment in research into diseases and their treatments. He also claimed resources “for support in the day-to-day management of what the disease means for families.”