The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) has formalized a collaboration agreement with the General Council of Pharmaceutical Associations (CGCOF), with the aim of improving pharmacists' knowledge of rare diseases and treatments for them, orphan and ultra-orphan drugs.
This agreement, which has an initial duration of two years and can be extended, includes a series of training and dissemination actions, with the aim of promoting a greater understanding of these drugs among healthcare professionals. The first joint initiative between the two institutions that has already seen the light of day is the launch of the "Pharmacy and Orphan Drugs" channel on the General Council's YouTube channel, #TuFarmacéuticoInforma.
The launch of this channel coincides with the commemoration of World Rare Disease Day, which is celebrated on February 28. In Spain, more than three million people are affected by these pathologies, according to data from the Spanish Federation of Rare Diseases (FEDER). Through this channel, 12 bimonthly videoconsejos will be published, offering quality information on orphan drugs, their development, approval in Europe, as well as myths and realities about these treatments.
Boosting knowledge
The president of the General Council of Pharmaceutical Associations, Jesús Aguilar, stressed that the aim of this collaboration is to improve the training of pharmacists on orphan and ultra-orphan drugs, "which will allow us to offer better advice to patients and promote adherence to treatment in people with rare diseases".
Beatriz Perales, president of AELMHU, has also expressed her satisfaction with the agreement, pointing out that this collaboration is "an excellent opportunity to increase awareness" among both healthcare professionals and society in general about rare diseases and orphan drugs.
#YourPharmacistInforms
The #TuFarmacéuticoInforma channel, with more than 620,000 followers and over 134 million views since its creation in 2016, is part of the YouTube Health Spain initiative, will help disseminate valuable information for both healthcare professionals and the rest of the population.
The first video of the channel "Do you know what rare diseases are? And orphan drugs?" is now available. Through the narration of Jorge Vázquez, national spokesman for Industry of the General Council of Pharmaceutical Associations, the episode explains that rare diseases are those with a very low prevalence, affecting less than 5 out of every 10,000 people in the European Union, but that, as a whole, they affect more than 300 million people worldwide. These diseases are usually chronic, severe and disabling, and most of them have a genetic origin.
On the other hand, there is also an introduction to what orphan drugs are, referring to them as treatments designed for these diseases, and although their development is complex and can take more than 10 years, they face additional challenges in terms of access and commercialization.
Upcoming episodes, which will be released throughout 2025 and 2026, will cover key topics related to research, diagnosis, treatment of rare diseases, and the development and approval of orphan drugs in Europe.
Through this new space, the General Council of Pharmaceutical Associations and AELMHU reinforce their commitment to quality health information, offering valuable information for pharmacy professionals and society, in order to improve care for patients with rare diseases.
