The third day of the ELPA Educational Training took place on June 30, 2021, and focused not only on presentations delivered by pharma companies‘ representatives.
The meeting started with Ms. Mireia Alemany, who presented ‘A Healthy Liver Will Always Deliver!‘, a comic to raise NAFLD awareness and promote healthy lifestyles.Firstly she explained some general concepts related to why comics are an excellent way to come across medical content. Then she gave more details related to the comics born in the Fois Gras Project framework – funded under Horizon 2020 Marie Sklodowska-Curie program – and in collaboration with: metabolic patients, psychologists, sociologists, and a European network of biomedical researchers.
After the presentation, a questions and answers session, moderated by Mr. Marko Korenjak, ELPA President, allowed the participants to go deeper into details. Attendees were particularly active, and questions were mainly focused on the possibility to translate the comic into more ELPA Members‘ national languages.
The second presentation was delivered by Dr. Florian Abel, MD, and Dr. Brian Meltzer, MD, representatives from Alexion Pharma. They gave an overview of Alexion‘s commitment to the field of two specific rare liver diseases: Lysosomal Acid Lipase Deficiency (LAL-D) and Wilson Disease. They both also stressed the patients’ journey towards a diagnosis and their challenges.
Before Mr. Marko Korenjak wrapped up the meeting, as it happened after the first presentation, Alexion’s presentationwas followed by many questions primarily related to clinical trials and the importance of working together with patients associations to raise awareness on these two rare diseases.