In the framework of the World Day for People Without Diagnosis, prominent leaders and experts in the field of rare diseases gathered at a high-level roundtable entitled "Importance of research for early diagnosis of rare diseases", organized by the Ibercaja Foundation and the Spanish Federation of Rare Diseases (FEDER).
The event was moderated by Ana Moreno and included the participation of key figures such as Juan Carrión, president of FEDER, Chema Soria, president of the Spanish Ichthyosis Association, Eva Bermejo, director of the Rare Diseases Research Institute, and Marian Corral, director of the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories, among other prominent hospital representatives such as Alicia Tajada, from Miguel Servet University Hospital and Diego Rodríguez Mena, from Lozano Blesa University Clinical Hospital, shared their perspectives on the challenges faced by people with rare diseases and the importance of research in this field.
The event was also attended by Jose Luis Bancalero Flores, Regional Minister of Health of Aragon, who showed his support for people living with rare diseases or in search of diagnosis in Aragon and committed to the implementation of the Comprehensive Plan for Rare Diseases in Aragon.

During this meeting, the crucial importance of research and early access to diagnosis in the treatment and improvement of the quality of life of millions of people affected by rare diseases around the world was highlighted. With more than 7,000 rare diseases identified and millions of people affected, the promotion of research and equitable access to diagnosis are key pillars in addressing the challenges faced by these patients and their families.
Participants emphasized the need for greater collaboration between all stakeholders, including public administrations, patient organizations and the scientific community, to advance research, improve diagnosis and provide comprehensive support to those living with rare diseases. In addition, the importance of promoting socio-health coordination to ensure that everyone has access to the necessary services was highlighted.
In this sense, the meeting underlined the importance of continuing to work together to advance research, improve diagnosis and ensure comprehensive support for people with rare diseases and their families.
From AELMHU, we would like to express special thanks to all participants for their valuable contributions and extend our appreciation to the organizers for including the Spanish Association of Orphan and Ultra Orphan Drug Laboratories (#AELMHU) in this crucial dialogue. These meetings are essential to enrich the dialogue and foster the exchange of ideas on an increasingly relevant topic in healthcare.