Saul Martinez
collaborator
@DiarioCoLatino
25 years after its founding, the Spanish Federation of Rare Diseases (FEDER) pointed out that research is its maximum contribution to the identification of new pathologies throughout Europe, but especially in the province of Seville.
FEDER indicated that years ago, many diseases such as Amyotrophic Lateral Sclerosis, Prader Willi Syndrome, Marfan Syndrome, Gilles de la Tourette Syndrome, among others, had no response in health centers.
On the occasion of the commemoration of “World Rare Diseases Day”, whose date is every February 29, the Federation held an official event on March 5 chaired by Queen Letizia, who during her speech expressed that recognizing the specialty in clinical genetics , is central to promoting precision “personalized medicine.”
“When we talk about prevention, we are not only referring to primary prevention, but also to prevention linked to research,” said Letizia.
Likewise, she was emphatic in expressing that early diagnosis and equal access to pharmacological treatments and different therapies are important, since, if the causes of rare diseases are not identified, they cannot be prevented.
Mónica García, Minister of Health of Seville, stressed that rare diseases affect three million people in Spain, and each person faces various challenges in accessing their treatments.
“Through research, 15 new rare diseases have been identified, there have been significant advances, awareness and collaboration of various actors with ERDF have been key in its development,” García pointed out. Juan Carrión, president of the FEDER, mentioned that Seville was where they were born, with seven associations, currently there are more than 400. “We are present throughout Spain, Europe, Latin America, and we have reached the United Nations Organization.”
Carrión reaffirmed that Rare Diseases have a political and social impact, which is why certain efforts cannot be ignored, because behind all the inter-institutional work, there are family nuclei that daily share the same empathy so that society is more humane, which is why , the support of the Royal House is of vital importance.
FEDER is carrying out 80 research projects related to Rare Diseases, together with health authorities and a large team of researchers. At the event, special recognitions were also given to entities committed to research, diagnosis, treatments and therapies in Rare Diseases, under the central motto: Prevention is better than cure!
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