AELMHU, represented by Sergio Bullón, member of the Board of Directors, has participated in the event organized by Sobi and Bioinnova Consulting in the Senate to present the document "Coordinates in Rare Diseases".
This project is part of Sobi's "acERca rare diseases" program, in which communication channels are established with healthcare professionals, professionals from the educational and work environment, administrations, patients and their representatives to create synergies with the aim that everyone can add their knowledge about rare diseases and, together, contribute to improving the quality of life of patients".
The meeting, which was attended by members of the Senate Health Commission, the general directors of health care of Extremadura, Madrid and Murcia and representatives of FEDER, has served to provide support and impetus to the regional strategies for rare diseases, as well as to promote synergies of knowledge between the different autonomous communities in order to respond to the needs of patients.
The event was closed by Sergio Bullon of AELMHU Beatriz Perales, Director of Market Access, Institutional Relations and Communication for Sobi Iberia, Daniel de Vicente, member of the Board of Directors of FEDER.
During his speech, Sergio Bullón took the opportunity to present the Association and its purpose of contributing to improving the health and quality of life of people affected by rare/infrequent diseases, giving visibility to the pathologies and highlighting research and treatments for them.
Full document available here:
