People living with Rare Diseases face very specific challenges: difficulties in early access to specialist consultations, scarcity of structured support for families, and lack of continuous care throughout the entire life cycle.<\/p>\n\n
With the clear purpose of placing people and their families at the center of action, the Alto Alentejo Rare Diseases Nucleus was established.<\/p>\n\n
This Nucleus assumes an aggregating and coordinating function, integrating multidisciplinary teams and, in a truly differentiating manner, including in its governance a family member of a person with a Rare Disease. In this way, the experience lived by families is now directly represented in the definition and implementation of responses. <\/p>\n\n
One of the structural pillars of the project is the construction of the Journey of the Person with a Rare Disease, reinforcing integration between health, education, and social support. In parallel, there is a focus on a strategy of dissemination, literacy, and community capacity building, essential for a more consistent, close, and sustainable response. <\/p>\n\n
The PADIS Online Forum will be an opportunity to learn about this project through the testimony and experience of one of the protagonists of this initiative.<\/p>\n\n
6:30 PM | Welcome 6:40 PM | Rare Diseases: From the Genesis of a Nucleus to Building a Path 7:10 PM | Q Session<\/p>\n\n 7:30 PM | Closing<\/p>\n\n <\/p>\n\n