A year ago, during the celebration of World Rare Disease Day in León, Queen Letizia met Marco, a child affected by a so-called rare disease. “I couldn’t exchange a word with him, he kissed me and looked at me. And that was enough.” This Thursday, in Santiago, the Queen could not hide her emotion after learning that the 5-year-old boy died a few months ago. In her words, on the occasion of the celebration of a new World Day, the Queen has not limited herself to asking for more investigation and an early diagnosis, she has managed to convey her passionate commitment to those affected, recounting the stories of various affected children and adults.
Rare diseases are so called because, despite the fact that they affect millions of people, they also have thousands of pathologies and are difficult to treat since most of those affected must wait years to be diagnosed. Queen Letizia has been involved for years in the mission of giving visibility to affected people, both sick and family members, and this Thursday, as honorary president of FEDER (Spanish Federation for Rare Diseases) she has led the campaign Make time runs in our favor. The motto, which calls for equity in access to diagnoses, has been the focus of the World Day for Rare Diseases event that has been convened in Santiago de Compostela.
The Queen has closed the act by talking about those affected such as Amanda, Itziar, Antonio, Pol, Jon, Alex. “Come closer to them”, Letizia said, “read what their life is like, how they breathe every morning and think about the day that awaits them until the sun goes down again”. And, finally, he remembered Marco who “after five years polymedicated, with severe intellectual disability, fed by a tube, with a tracheostomy, with all possible care and all the love, died peacefully together with his parents and siblings”.
Letizia also recalled her commitment to FEDER that began 15 years ago, “verify everything you have achieved, see how your entities work, the immense and hard road that you have traveled and that you have allowed me to be very close to you, this time has been It is a joy, a learning experience, a concession that fills the institutional action that guides me with meaning and usefulness”
The objective of the Make time run in our favor campaign, launched by FEDER and endorsed by the Queen, is to highlight the need to counteract the odyssey and pilgrimage that families seek for diagnosis, treatment and medical attention that varies according to the pathology and geographic location of those who live with rare diseases. This reality is replicated throughout the world and in Spain it materializes in a general diagnostic delay of more than 4 years.
Juan Carrón, president of FEDER, recalled that “a significant percentage of the affected population wait a decade to get the name of their disease or even die without naming the disease.” In Spain there are approximately three million people diagnosed with one of the 6,172 rare diseases identified. Only 5 percent of the 6,172 rare diseases have an “orphan” drug that can improve the quality of life or cure, a total of 146 treatments of which only 63 are financed by public health. According to FEDER data, currently only 20 percent of rare diseases are the subject of research worldwide.
