On March 15, 2023, Queen Letizia attended an official event held at the Congresses and Exhibitions Palace of Galicia in Santiago de Compostela, Spain, on the occasion of World Rare Diseases Day 2023. The event was organized by the Spanish Federation of Rare Diseases (FEDER) under the slogan “Make time work in our favor” and aimed to raise awareness about rare diseases and the challenges faced by those living with them.
Rare diseases are defined as conditions that affect fewer than five in 10,000 people. Despite their rarity, these diseases collectively affect a significant number of people globally. In Spain alone, an estimated three million people live with a rare disease, and half of them face delays in diagnosis. This delay can lead to worsening symptoms, a decline in quality of life, and even premature death.
The World Rare Diseases Day 2023 event in Santiago de Compostela was part of a global campaign aimed at promoting international mobilization to address the difficulties of equal access to diagnosis and treatment for these diseases. The event highlighted the need for greater support for affected individuals and their families, including improved access to healthcare, research funding, and social services.
The Spanish Federation of Rare Diseases (FEDER) organized the event to help raise awareness about the challenges faced by those living with rare diseases. The event included presentations from medical professionals, patient advocacy groups, and government officials. Queen Letizia’s attendance at the event highlighted the importance of addressing rare diseases and the need for greater support for affected individuals and their families.
During the event, Queen Letizia met with patients and families affected by rare diseases and listened to their stories. She also praised the work of FEDER and other organizations working to improve the lives of those affected by rare diseases. The event aimed to send a message of hope to those affected by rare diseases and to inspire others to join the global movement to improve the lives of those living with rare diseases.
In conclusion, Queen Letizia’s attendance at the World Rare Diseases Day 2023 event in Spain highlighted the importance of addressing rare diseases and the need for greater support for affected individuals and their families. The event helped raise awareness about the challenges faced by those living with rare diseases and promoted international mobilization to address these challenges. With continued efforts from patient advocacy groups, healthcare professionals, and government officials, we can work towards a brighter future for those affected by rare diseases.