Joaquim Brites has a 28 year-old son with Duchenne Muscular Dystrophy. Joaquim Brites has been involved with APN, a Portuguese neuromuscular association, for more than 20 years. He was a member of APN’s Board of Directors and became its President in 2012. APN focuses on direct support for neuromuscular disease patients and their families. Joaquim Brites is also the President of the General Assembly of the Portuguese Alliance of Associations of Rare Diseases since 2012 and represents Portuguese neuromuscular patients, in several European organisations. He represents Portugal in the Rare Diseases Platform (“Plateforme Maladies Rares”) in France.