The Queen of Spain participated online in an event that takes place in parallel to the UN High-Level Political Forum on Sustainable Development, titled 'On the road to recovery from COVID-19 and the achievement of the Sustainable Development Goals: let's address the challenges of people living with a rare disease as human rights, a priority for sustainable development.' The forum is held between July 6 and 15 in New York.
This is a milestone and a further step in Spain's support towards the approval of the UN Resolution on Rare Diseases, for which the FEDER (Spanish Federation of Rare Diseases) has been working for years together with similar international platforms to urge all member states to develop policies that respond to families who live with these pathologies or are in search of a diagnosis. A Resolution that would allow greater recognition of rare diseases at the international level to make recommendations, place the issue on the agenda of the UN system and demand the action of United Nations agencies.
In her speech, Her Majesty said that “rare diseases affect more than 300 million people around the world. And that two out of three make their debut early before they are two years old ”. These are "very complex, progressive and disabling chronic pathologies that - I continue - make these children very vulnerable patients with great health and social dependency." For this reason, Queen Letizia stressed that “Spain, together with Brazil and Qatar and with the determined impulse of FEDER, Eurordis and Rare Diseases International, will present a resolution granting the common framework of fundamental action and cover the requirements of those who suffer from a minority disease or seek an adequate diagnosis ”.