Patient or Advocate: Fabio Figueiredo Disease Affiliation: FSHD
Brazilian Association for Facioscapulohumeral Dystrophy
The lack of genetic testing and a patient registry in Brazil has been a major obstacle to improving care and trial readiness. In response, ABRAFEU has established a nationwide network of 18 neuromuscular clinicians collaborating to provide genetic testing to Brazilian patients in collaboration with the Peter Jones laboratory at the University of Nevada. In addition. ABRAFEU is establishing a mobile phone-based national registry database. We have also initiated a collaboration between Radboud University and Institute Vita to train physical therapists in Brazil on FSHD clinical assessments.
We will use a new app called “TeleNeumu” in partnership with Instituto Pedro Molina and UNIFESP (São Paulo Federal.