NEWS

AELMHU takes part in the IBIMA-RARE conference on rare diseases

AELMHU takes part in the IBIMA-RARE conference on rare diseases

The association's director, Marian Corral, has travelled to Malaga to participate in the VIII Interdisciplinary Conference on advances in rare diseases organised by IBIMA-RARE at the Rectorate of the University of Malaga.

This conference has been organised since 2015. For this edition, the name "Raise awareness, become visible" has been chosen and it has had two blocks, the first to talk about research into rare diseases in which the following have spoken: Pedro Valdivielso Felices of the Hospital Clínico Universitario Virgen de la Victoria in Malaga, Dr. Pascual Sanz Bigorra, Head of the U742 group of the CIBERER, Institute of Biomedicine of Valencia (CSIC) to speak on "The search for treatments for rare neurological diseases: the case of Lafora disease", Dr. Manuel Bernal Muñoz, Researcher at the Department of Molecular Biology and Biochemistry of the University of Malaga whose intervention focused on "The mitoproteome as a tool for the understanding of rare neurological diseases: the case of Lafora disease", Dr. Manuel Bernal Muñoz, Researcher at the Department of Molecular Biology and Biochemistry of the University of Malaga whose intervention focused on "The mitoproteome as a tool for the understanding of rare neurological diseases: the case of Lafora disease".

Dr. Manuel Puig Domingo, Head of the Endocrinology and Nutrition Department at the Hermanos Trías y Pujol University Hospital in Barcelona, who spoke on "The treatment of acromegaly in the era of personalised precision medicine".

The second block focused on "Health care and the social reality of people affected by rare diseases". In this panel, the Director of the Association spoke on "Access to orphan drugs in Spain", presenting data from the latest "Annual report on access to orphan drugs 2021" published by AELMHU in February, and Noah Higón Bellver, who focused his presentation on his daily struggle to make rare diseases visible through social networks.

Miguel Ángel Medina Torres, Area Coordinator, and Raquel Yahyaoui Macías, Deputy Area Coordinator, were responsible for organising the event.