Our president, Beatriz Perales, participated in the National Conference on Health Management and Rare Diseases, organized by the Spanish Society of Health Managers (Sedisa) and AMGEN, which highlighted the fundamental role of patient associations and the advances in research, diagnosis and treatments to improve the quality of life of people affected by rare diseases.
The first round table, entitled "State of the art and benchmark initiatives in the management of rare diseases", moderated by Mr. José Manuel Martínez Sesmero, Deputy Medical Director of the Lozano Blesa Clinical Hospital, was attended by Mr. Carlos Bezos, Director of the Institute for Patient Experience, Ms. María José Abadias Medrano, Healthcare Director of the Vall D'Hebron University Hospital, Mr. Marcos Hernández Pereña, Deputy Medical Director of the Gregorio Marañón University General Hospital and Mr. Julián Isla, President of Foundation 29, Member of the EMA Committee. President of Fundación 29. Member of the Committee for Orphan Medicinal Products of the EMA.
The second round table, "Perception of the journey of patients with rare diseases from the perspective of the healthcare professional and patients", moderated by Julio Zarco, President of the Humans Foundation and Manager of the Niño Jesús University Children's Hospital, was attended, together with Beatriz Perales, by Mr. José Ballarín. Nephrologist and Member of the Scientific Committee for IgG4 RD in ERN ReCONNET, Mr. Antonio Garrido Hermosilla, Ophthalmologist at the University Hospital Virgen de la Macarena and Ms. Aurora Fernández Polo. Hospital Pharmacist at Vall d' Hebron University Hospital.
During her speech, the president highlighted the need to address the diagnostic delay in rare diseases in our country and also took the opportunity to highlight the importance of the association network as a key driver for research and visibility of rare diseases. In her words "associations are the voice of patients, they help to break isolation, inform families and promote social awareness of these pathologies".
Moreover, he stressed the need to address the challenges of rare diseases in a comprehensive manner, underscoring the importance of fostering research, promoting the development of orphan drugs, managing centers of expertise and ensuring equitable access to treatment. For patients to receive the care they really need, public-private collaboration is essential.
AELMHU has also advocated for a model of care that goes beyond clinical treatment, recognizing the social and emotional needs of the patient, as well as the importance of a coordinated network of professionals in their approach.
At the Association we believe that, while scientific advances are crucial, human accompaniment and the creation of inclusive public policies are equally essential to transform care and improve the quality of life of patients with rare diseases. For this reason, we must work together with all the agents involved.
