Queen Letizia gave an impassioned speech at an event to mark World Rare Diseases Day in her role as one of the directors of the Federación Española de Enfermedades Raras (English: Spanish Federation of Rare Diseases).
“It is always, a privilege that you allow me to be with you for another year. Thank you from the bottom of my heart for it. After all that we have seen and heard here today, after listening to the true protagonists of this two-decade road from FEDER, I would just like to recognise the work of all the associations that make up this federation.”
Queen Letizia was joined by the President of the Congress of Deputies, Meritxell Batet; the Minister of Health, Salvador Illa; the President of the Spanish Federation of Rare Diseases, Juan Carrión; and the President of the BBVA (Banco Bilbao Vizcaya Argentaria), Carlos Torres.
Queen Letizia also presented awards to researchers who specialise in rare diseases, including awards for the promotion of specialised services in rare diseases (to the Fundación Mutua Madrileña); investigation (to the HNA Foundation); and social transformation (to the Pilot Plan for the Improvement of the Genetic Diagnosis in the Community of Madrid, Extremadura and the Balearic Islands).
World Rare Disease Day is an annual day of recognition that was marked on 29 February this year to raise awareness for rare diseases and the need to research and develop cures. This year, the FEDER celebrates its 20th anniversary and also decided to publish three goals for the future: research, social transformation, and services for patients and families.
“Twenty years of work of FEDER and its associations that already give us a solvent perspective to look back and realise what you have advanced,” Queen Letizia said.
“Twenty years in which you have changed the perception of Spanish society about what is a rare disease. Thank you all for continuing tirelessly in a battle that nobody can imagine.”
The FEDER works “comprehensively with families with rare diseases through projects and services aimed at improving their quality of life in the short, medium and long term, as well as promote a society in which people suffering from a rare disease have the same opportunities in life as the rest, regardless of the rarity of their disease,” according to the Royal House website.
The FEDER classifies rare diseases as those that have less than five cases per 10,000 people.
Queen Letizia continued, “We are all born with three billion chemical units represented by the letters A, C, G and T, you all know what I am talking about. A simple change in the order of those letters and a child develops a syndrome of so many that exist and that is a devastating disease that compromises the future of that child and his family, but which must also compromise our future as a society.
“That is why the implication, support, constant help, permanent encouragement, effective action in all areas of responsibility, both in public administrations and institutions and in the private sector are inexcusable. We will continue here twenty more years. And forty. And those that are needed for the tools that already exist (new molecular and gene therapies, for example) continue to develop to glimpse a reality that – even today – is unfortunately far away: the cure of some of these rare diseases. We must keep thinking that it is possible.”
Queen Letizia’s full speech can be found here.
