“Twenty-five years from now, when we celebrate FEDER’s 50th anniversary, I will be 76 and I hope, hopefully, that you will also count on me.” With these words, Queen Letizia has reiterated her commitment to people affected by so-called rare diseases and to their families, at the central event of the “World Rare Disease Day”, which was held this Tuesday in Seville, a city that saw the birth of the Spanish Federation of Rare Diseases (FEDER), 25 years ago.
This year, the meeting has as its motto “In rare diseases, is prevention better than cure?” In her words, the Queen has assured that “prevention is stopping the consequences of suffering from a less prevalent disease” and has opted for prevention “linked to research and early diagnosis.”
The Queen has also referred to “equal access to pharmacological treatments and different therapies.” “If we do not identify the causes of rare pathologies, we will not be able to prevent them,” she said.
Letizia, who for almost twenty years has supported research into rare diseases, and the commitment to those affected, one of her priority social causes, is not limited to appearing at some events, as honorary president of FEDER He usually attends work meetings periodically and also meets with affected families and the sick. This Tuesday, Letizia referred to all of them, highlighting their courage in the face of adversity: “We are here to recognize all the people who suffer from a rare disease and the families who accompany you on that path. Your strength. Your generosity. Your patience. And your intelligence. And also to recognize that capacity that you demonstrate every day to continue caring for your sons, daughters, father, mother, brothers, sisters. Continue caring. To continue claiming your rights. And to also remind us that this path of what he was talking about, we have it, we must all do it together.
In his speech, the president of FEDER, Juan Carrión, thanked Letizia for her support for almost two decades: “Thank you for allowing us to never feel alone; thank you for showing us that listening and that great closeness that you always show us when you are at our side.” side. Thank you, Your Majesty, because with your help you have changed our lives.
Within the framework of World Rare Disease Day, which is commemorated on February 29, the Spanish Federation of Rare Diseases (FEDER), under the motto “In rare diseases, is prevention better than cure?”, has organized a day in which all the agents have intervened in promoting research, early diagnosis and treatment and therapeutic approach to these pathologies. The Minister of Health, Mónica García, the president of Andalusia, Juanma Moreno, among other authorities, were present at the event.
In Europe, 6,313 rare diseases have been identified, although it is estimated that there may be more than 7,000. Most of them are genetic and pediatric in nature, in addition to having serious consequences for both the patient and his family. Added to this reality is the low prevalence and lack of knowledge surrounding them, which means that more than half of the cases wait more than 6 years to achieve a diagnosis. Added to this is the fact that, according to data from the European Alliance for Rare Diseases (EURORDIS), only 6% of rare diseases have treatment.
FEDER’s mission is to promote the rights of those who live with a rare disease and are seeking a diagnosis, generating strategies that contribute to improving their quality of life.