A full day of activities to celebrate World Rare Disease Day in Catalonia
On February 28th, from 9h:30 a.m. to 2h:30 p.m. in the Auditorium of the Parc de Recerca Biomèdica in Barcelona (PRBB), the World Rare Disease Day Managing Commission in Catalonia will organize an event to celebrate this day. This meeting will feature various professionals in the sector as well as patients and families who will give their views on various issues related to minority diseases.
The opening ceremony of the day will be given by the local Government Responsible of Health of the Generalitat de Catalunya, the Honourable Mrs. Alba Vergés, and afterward the testimonies of Alex Roca, father of a child affected by myotubular myopathy, Laura Moreno, affected by Fanconi's anemia and Susana Martínez, affected by Von Hippel Lindau disease, will be heard.
The first part of the event will be dedicated to the new challenges and opportunities in biomedical research and, throughout the second session, various topics of a more therapeutic and social scope will be dealt with, such as the evaluation of disability, physiotherapy, dog-assisted therapies, and paediatric palliative care. This last project will be explained by Dr. Sergi Navarro, Head of the Paediatric Palliative Care Unit in the Paediatrics Department of the SJD Barcelona Children's Hospital. At the end of the day, the Managing Commission of World Rare Disease Day in Catalonia will award the professionals and/or entities most distinguished for their careers and commitment in favour of rare diseases.
In Catalonia, there are 400,000 people affected by rare diseases and this event aims to give visibility to the urgent need for improved access to support services for all of them.