The Regional Directorate for Health promotes a seminar Monday, February 29, to mark the Rare Disease Day, which is celebrated on that date.
The seminar will take place at the auditorium of Espírito Santo Hospital in Ponta Delgada and will be broadcast via videoconference to Horta Hospital.
With this initiative, the Regional Directorate for Health intends to create a space for reflection on the crucial role of patients in expressing their needs and making changes to improve their lives and those of their families, being in line with the goals of this day - "The voice of patients."
It is also intended to urge people who do not suffer from rare disease or are not directly affected by one to "join the rare disease community and disseminate the impact they have."
In this context, the Regional Health Directorate invites the population to "give voice to rare diseases," stressing that patients, family members, caregivers, patient organisations, policy makers, health professionals, researchers and the community in general can "help making rare diseases the centre of attention."
The seminar will address rare diseases in general as well as the Machado-Joseph and Neurofibromatosis diseases. There will be discussion forum for the sharing of testimonials that will be attended by representatives of the two patients' associations and patients.