July 7, 2021: Queen Letizia intervened virtually during the UN High-Level Political Forum - 2021: Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority.
I would like to extend my warmest greetings to everyone who has been involved in this initiative to call for a United Nations resolution that sets forth how to address the challenges faced by people living with a rare disease. Thank you for allowing me to take part in these efforts, which have been supported by supported by so many actors committed to the task of improving the lives of people afflicted with uncommon diseases.
One of these actors is Feder, the Spanish Federation of Rare Diseases, with which I have been collaborating closely for a decade now. Feder does everything possible, working on all fronts to establish partnerships between administrations, institutions and patient associations looking to reduce the diagnosis times, to provide information, assistance and care to the families in all areas, to seek the appropriate treatment for patients in those cases where a diagnostics is obtained and to promote the coordination and financing of scientific research, which is the hope of millions of people.
You all know that rare diseases affect more than 300 million people around the world. And that two out of three of such diseases affect people very early on in life, before the age of two. We are talking about chronic, complex, progressive and disabling diseases that make these children highly vulnerable patients who are greatly dependent on health and social care services.
For this reason, Spain, together with Brazil and Qatar, and with the decisive momentum provided by Feder, Eurordis and Rare Diseases International, will present a resolution at the next United Nations General Assembly that provides a common framework for fundamental action and covers the requirements of those who suffer from a rare disease or seek the proper diagnosis.
A resolution, moreover, that will link this commitment to cooperation to the Sustainable Development Goals. And there are several objectives involved, but its connection with the guarantee of a healthy life and the promotion of well-being at all ages is evident. I will not list them all but ending poverty and achieving gender equality, decent work and inclusive economic growth, fostering scientific research for the purposes of industry and innovation, the reduction of inequalities and, of course, the creation of strong global partnerships are objectives that directly impact the challenge that our societies face with the reality of rare diseases.
Given that, as you all know, there are many children living with rare diseases, you can imagine the enormous difficulties of so many boys and girls to have a quality education. The Covid-19 pandemic has laid bare the problems of millions of children to access this fundamental right. I have made reference to this Sustainable Development Goal as it is essential on the path of achieving a more dignified life for those who live with such illnesses. Although, it is clear, the rest of the SDGs also indicate where the union of efforts should go to guarantee the inclusion and full development of people with rare diseases.
In Spain, the National Strategy for Rare Diseases tries to comprehensively address the challenges identified by patient organizations, with initiatives and reference centers that include the coordination of social health systems at the highest level of integration in all areas. We have made some headway, but we still have a long road ahead. For example, we have yet to determine the full impact of the pandemic on people living with rare diseases.
As you have probably already imagined, my intention has not been to detail each challenge. Rather, we will hear shortly from individuals affected by these diseases and from their representatives - whom we will hear shortly - who will explain the requirements of how to better protect their rights and how to give them confidence in the future and concrete results. Spain fully supports this draft resolution which, we hope, generates the disposition, will to act and commitment of all so that the rare diseases that affect so many millions of people impact their lives in the least painful and disabling way.
This is our responsibility. Thank you very much.
