• Sorority Doña Letizia, the only European Queen who does not celebrate 8-M
  • Queen Letizia reaffirms her support for mental health: "It is an issue that matters to us all"

After participating with King Felipe in the ceremony of delivery of the accreditations corresponding to the tenth edition of Honorary Ambassadors of the Spain Brand, Queen Letizia presided over this Thursday the official ceremony for the World Day of Rare Diseases, in Santiago de Compostela, organized annually by the Spanish Federation of Rare Diseases. A day, under the slogan Make time go in our favor, whose objective is to promote an international mobilization that curbs the difficulties of access in equity to diagnosis and treatment for these rare diseases.

Doña Letizia traveled to the Galician capital accompanied by the Minister of Health, Carolina Darias and there she pointed out of this type of diseases that "when you can not cure, you can take care of it". "Human treatment, resources, emotional support, clear and understandable information, listening, complicity in the process, comprehensive care. The professional who faces a patient with no possibility of cure also needs to know how to do it," he said.

Likewise, in her speech, Doña Letizia reviewed the challenges faced by people with rare diseases and their families, highlighting the importance of "equity in access to diagnosis, genetic testing or neonatal screening in all Autonomous Communities", among others.

Before ending her speech, the Monarch dedicated a few words to Marco, a five-year-old boy who suffered from Schaaf-Yang syndrome, a disease caused by a genetic disorder caused in turn by an alteration in the MAGEL2 gene, which is located on chromosome 15; whom he met "such a day as today", in León in 2022, and who died two months ago.

"Marco had Schaaf-Yang syndrome and two months ago, his father, Ricardo, sent me an e-mail to tell me that Marco, after five years polymedicated, with severe intellectual disability, fed by tube, with a tracheotomy, with all the possible care and all the love in the world, died peacefully with his parents and his siblings, "he began saying (minute 3.53 in the video).

"That day in March, in León, I could not exchange a word with Marco, but he put his hand on mine, gave me a kiss and looked at me. And it was enough," she added, visibly moved. "Marco is not the first nor will he be the last", but "we must continue taking steps, we must continue together on this path. And you have me by your side."

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