The RehabRARAS project is holding a meeting on Technologies for People with Rare Diseases.

In commemoration of World Rare Disease Awareness Month, the ReHabRARAS project held a remote meeting on the evening of February 26th entitled "Technologies for People with Rare Diseases," with the aim of discussing the role of pharmaceutical, digital, telerehabilitation, and assistive technologies in modifying the natural history of rare diseases, promoting functionality and autonomy, and improving the quality of life of affected individuals. Led by Professor Adriana Faiçal, coordinator of RehabRARAS, the event featured presentations by professors from [institution name - missing from original text]. Bahiana and guests from other institutions.

"Therapies that modify the natural history of Rare Diseases" was the topic of the lecture given by the coordinator of the Neuromuscular Outpatient Clinic. Bahiana Health, Professor Dr. Marcela Costa. Following her, Professor Adriana Faiçal addressed the current context of patient care for those with rare diseases with the lecture "Digital Health, Telerehabilitation and Intelligent Platforms," ​​discussing the RehabRARAS project, which aims to implement an innovative platform to support the rehabilitation of people with rare diseases, offering health education, telerehabilitation, gamification, and remote functional assessment. The program also included the participation of engineer Rafael Alves, who presented the topic "Assistive Technology and User-Centered Design." "In the current era of artificial intelligence and new technologies, looking at the user as the person for whom you are developing this resource makes more and more sense. In engineering, we are always promoting and creating new technologies, and often we develop and implement them without this user-centered perspective," emphasizes Rafael Alves.

The perspective of rehabilitation technologies in the lives of people living with rare diseases was also part of the meeting, with Samuel Costa and Rafael Francisco sharing their personal experiences. Civil society was also present at the meeting, with the participation of Karina Zügue, president of the Brazilian Dystrophy Alliance and the Rio Grande do Sul Muscular Dystrophy Association, who addressed the topic "Advocacy, access, and collective challenges." "We work a lot with awareness. So, moments like this are important for us to talk about ourselves, with knowledge and ownership of the subject, which allows us to seek information about our condition and our rights," declared Zügue.