Queen Letizia has urged this Thursday in Santiago to continue giving steps all together for “comprehensive care” for people with rare diseases because “when you can’t cure, you can take care” and it is necessary not only an early diagnosis but also humane treatment, emotional support, or resources, among others.
In his speech at the official act for World Rare Disease Day, which he chaired in Santiago de Compostela, he alluded to the challenges in this area, such as “equity” in access to diagnosis, with genetic tests and neonatal screening in all the autonomous communities.
He has also advocated for promoting the European Action Plan for Rare Diseases and for recognize the specialty of genetics in Spain, as well as for “implementing coordination routes in the health system” when the disease does not yet have a name or for considering those who have not yet been diagnosed and their families as a differentiated group in the Administration.
“We have all taken note”, said the queen, of the need to maintain “effort and commitment” to understand living with a rare disease, but He has also demanded to listen to the testimonies to know “what his life is like” and “how the injured breathe every morning”.
The queen has had a special memory for Marcos, a five-year-old boy she met last year in León -where the official act was held on the occasion of Rare Disease Day- who died two months ago and has lamented that “it is not the first nor will it be the last.”
still remain “many steps to take” on a path in which “you will always have me on your side”she has emphasized, to end a speech that began with a “warning to walkers” that she was the last to intervene and a phrase in Galician about the “beautiful choiva” that hosted this act.
At the event, she was accompanied by the Minister of Health, Carolina Darias; the president of the Xunta, Alfonso Rueda Valenzuela, and the mayor of Santiago, Xosé Sánchez Bugallo, as well as the president of Feder, Juan Carrión, among others.
During this celebration, the Feder 2023 recognitions to high-impact projects and initiatives to improve access to diagnosis for people with rare diseases, with a special award to doctor Ángel Carracedo, researcher and expert in genetics.
In Spain there are approximately three million people diagnosed with one of the 6,172 rare diseases identified, of which there are around 200,000 in Galicia.
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