In an effort to unravel the complexities associated with the diagnosis, treatment and management of patients with rare diseases in Spain, health experts, researchers and representatives of key organizations gathered at the Ramón Areces Foundation for the conference "Current Situation of Rare Diseases in Spain".
The meeting, organized in collaboration with the Spanish Federation of Rare Diseases (FEDER) and the Center for Biomedical Research Network on Rare Diseases (CIBERER), was divided into three roundtables, each addressing crucial aspects of these rare diseases. AELMHU was present to show its support for the organizers and their unwavering commitment to patients who depend on treatments for rare diseases, as well as its endorsement of the vital work these organizations carry out in research, support and advocacy for the rights of those suffering from these diseases.
The first panel, moderated by Pablo Lapunzina, Scientific Director of CIBERER, together with Isabel Motero, Director of the FEDER Foundation, explored the context and prevalence of rare diseases in Spain, highlighting the challenges faced by patients and researchers.
The second round table, focused on advances in diagnosis, was attended by experts such as Julián Nevado from the Institute of Medical and Molecular Genetics of the Hospital La Paz, and Raquel Blanco, Neuropediatrician of the Hospital Universitario Central de Asturias, who discussed the latest diagnostic tools and techniques.
Finally, the third round table focused on therapeutic advances, with prominent speakers such as Beatriz Blanco of the Spanish Medicines Agency and Gloria González Aseguinolaza, president of the Spanish Society of Gene Therapy.
The meeting highlighted the importance of bringing together experts and stakeholders to share knowledge and foster collaboration to improve outcomes for people affected by rare diseases. It highlighted the need to approach these diseases from diverse perspectives and the importance of maintaining ongoing collaboration between entities to address the challenges faced by rare disease patients in Spain.
In addition, the difficulties related to patient access to innovative treatments were addressed and the importance of early diagnosis was emphasized, among other relevant topics.
