Orphanet and EURORDIS honoured with FEDER 2023 awards
On 16 March 2023, Orphanet was honoured by the Spanish Federation for Rare Diseases (FEDER) with an award for the creation of a specific ORPHAcode for undiagnosed patients. EURORDIS was also recognised for their leadership of the Rare 2030 Foresight Study, whose results are helping to drive a European Action Plan on Rare Diseases. The awards were presented to Ana Rath, director of Orphanet, and Yann Le Cam, CEO of EURORDIS, by Her Majesty Queen Letizia of Spain at a ceremony celebrating the country’s 2023 Official Rare Disease Day Act.
The ORPHAcode in question, 616874, was developed in 2021 in the framework of the RD-CODE project and is assigned to patients left without a definitive diagnosis following a full investigation by rare disease experts. The existence of such a code improves the visibility of the experiences of undiagnosed patients, and enables more precise epidemiological information about people living without a diagnosis and about rare diseases more broadly.
The Rare 2030 project concluded in 2021 with a set of recommendations which were developed over two years of participatory research involving experts and patients. The recommendations call for a European Action Plan on Rare Diseases, and lay out a roadmap for how future policies could improve the lives of the more than 30 million people living with rare diseases in Europe. In response to receiving the award, Yann Le Cam said:
"This is not just an award for EURORDIS but for our tireless community of 30 million people living with a rare disease in Europe and their families, healthcare professionals, academics and everyone who works in the field, who have jointly contributed to this effort through the Rare 2030 Foresight Study and beyond."
The FEDER awards recognise the importance of both Orphanet and EURORDIS's work to improve equity in access to care for people living with rare diseases in Spain. In particular, ORPHAcode 616874 helps advance the Federation’s goal of including undiagnosed patients in diagnostic and research programs, in line with the objectives of the International Rare Disease Research Consortium (IRDiRC), by enabling closer monitoring of the Spanish undiagnosed population.
A recording of the FEDER event, which took place in Spanish, is available on YouTube.
(Images via @FEDER_ONG on Twitter)
