Share4Rare had its place in the Informative Session for Patients and Families with Neuromuscular Diseases at Hospital Sant Joan de Déu Barcelona
The project was presented to patients and families dealing with muscular dystrophies
Last Saturday, October 27th, the Share4Rare project was presented at the 5th Informative Session for Patients and Families with Neuromuscular Diseases that is annually celebrated at Hospital Sant Joan de Déu Barcelona. Dr. Andrés Nascimento, responsible of the Neuromuscular Patient Integral Treatment Unit (UTIN), made a brief presentation about the main objectives and outcomes of the project to the attendees.
The session was the perfect platform to discuss various topics regarding the improvement of the quality of life of these patients, such as the latest news on clinical trials, diet and treatments or useful tips on preventing respiratory dysfunction. There was also time to explore patient participation on research through the presentation of different ongoing research projects, including Share4Rare. Finally, the session included several workshops coordinated by the members of the UTIN.