TheSpanish Association of Orphan and Ultra Orphan Drugs(AELMHU) and theNational Association of Health Informers(ANIS) have signed a framework agreement to collaborate in joint activities that give visibility and promote awareness of rare diseases and orphan drugs.
The agreement was signed by the president of AELMHU, Beatriz Perales, and the president of ANIS, Graziella Almendral, who emphasized the importance of accurate information in order to provide society with a rigorous and complete vision of rare diseases.
Under this collaboration agreement, AELMHU and ANISwill promote projects in areas of common interest to both organizations, such as health, treatment and quality of life of people affected by rare diseases. Thus, for example, participation in the congresses of both associations or the joint organization of training workshops are contemplated.
AELMHU and ANIS have been collaborating for several years on theTraining Seminars on Rare Diseasesaimed at journalists specialized in health. The aim of this training, given by professionals of great national prestige in the health field, is to create a meeting place where health reporters acquire knowledge to achievebetter accuracy and specialization on rare diseases and orphan drugs.
Thus, this type of conference allows the establishment of bridges between information professionals, the pharmaceutical industry that develops orphan drugs and the group of people with rare diseases, with the aim of achieving a more informed, sensitive and committed public opinion with this reality.
ANIS has around 700 members: health journalists from all over the country, with representatives of all existing media (press, radio, television and internet) and belonging to both the general and specialized press as well as national and local broadcasting. It also brings together representatives of the communication of health services and centers, institutions, entities and health companies, as well as communication agencies.
