Queen Letizia attended a working meeting with the Board of Directors of the Spanish Federation of Rare Diseases earlier this week to discuss upcoming initiatives.
Queen Letizia has been affiliated with the Spanish Federation of Rare Diseases for ten years, having participated in events for World Day of Rare Diseases in 2009.
The Federation released a statement marking the anniversary, saying that Queen Letizia has provided “historic support that has marked a before and after in our struggle,” according to Juan Carrión, President of the organisation.
“Thanks to the support of Her Majesty, we have been able to highlight and make visible, year after year, the most urgent problems of the group: access to diagnosis and treatment.”
Queen Letizia hosts a working meeting with the Federation every year since she first became involved to learn about the initiatives each year, which support 348 entities affiliated with the organisation.
At the meeting, the Federation discussed their working plan for 2019, their three-year plan, and preparations for World Day of Rare Diseases.
“During this year, and in line with the strategy developed during the past year, [the Federation and its Foundation] will continue to defend coordination as a formula to promote research into rare diseases,” the Royal House revealed in a press release.
Three key research areas for the Federation this year, it was revealed, are prevention, diagnosis and treatment.
According to the Federation, of those in Spain who live with rare diseases, 20% have waited more than a decade for a diagnosis – similarly, around 20% have waited between four to nine years – and only 34% have access to effective treatment once they’ve been diagnosed.
Queen Letizia was presented with a campaign plan for the World Day of Rare Diseases, which is marked on 28 February. The campaign, which will launch next week, focuses on investigating rare diseases.
As well, Queen Letizia learned about a February/March campaign that will align with the European Organisation for Rare Diseases, the Ibero-American Alliance for Rare Diseases, and the International Network of Rare Diseases.
