The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU), represented by its director, Marian Corral, attended the presentation of the Plan for the Care of People Affected by Rare Diseases in Andalusia (PAPER) on Friday.
The event, held at the Virgen del Rocío Hospital in Seville, was attended by the president of the Regional Government of Andalusia, Juanma Moreno, and the Minister of Health, Presidency, and Emergencies, Antonio Sanz.
Representatives from various associations were also present, including Carmen Moreno Olivera, member of the Board of Directors of the Spanish Federation for Rare Diseases (FEDER), as well as healthcare professionals and technical managers involved in developing the Plan. At the end of the day, Juanma Moreno and Antonio Sanz welcomed the patient associations that had attended the event.
The plan, coordinated by Javier Blasco Alonso, a specialist in hereditary metabolic diseases at the Regional University Hospital of Malaga, and Beatriz Muñoz Cabello, from the Pediatrics and Specific Areas Unit at the Virgen del Rocío University Hospital, has benefited from the collaboration of scientific societies and patient associations at both the national and regional levels.
The plan is structured around seven strategic lines with 109 measures at the primary and specialized care levels. These include actions to strengthen early diagnosis, ensure comprehensive and multidisciplinary care, promote the training of healthcare professionals, encourage research, and optimize information and registration systems.
Similarly, the PAPER also envisages the expansion of neonatal screening programs and the implementation of new digital tools to enable better identification, monitoring, and coordination of cases in the Andalusian healthcare system.
Likewise, an action plan will be designed for cases of rare diseases without diagnosis, and the protocols common to genetics units and clinical reference units for rare diseases will be updated. The plan also provides for the establishment of multidisciplinary rare disease units in each health area or, failing that, in referral hospitals, to coordinate cases suspected of a rare disease but whose nature does not allow them to be classified under a specific specialty with other specialties and primary care.
At AELMHU, we welcome the launch of this plan to strengthen care for people with rare diseases in Andalusia. We are confident that PAPER will help improve diagnosis, care coordination, comprehensive treatment, and access to treatments for rare diseases.
In this regard, we reiterate our willingness to actively collaborate with the Andalusian authorities and other entities involved, with the aim of helping to ensure that the planned actions have a real impact on improving the quality of life of patients and their families.
