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OnlinePeople 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.
With the clear purpose of placing people and their families at the center of action, the Alto Alentejo Rare Diseases Nucleus was established.
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.
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.
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.
Schedule
6:30 PM | Welcome
Prof. José Fonseca Pires
6:40 PM | Rare Diseases: From the Genesis of a Nucleus to Building a Path
Dr. Vera Escoto, President of the Rare Diseases Nucleus of ULS Alto Alentejo
7:10 PM | Q Session
7:30 PM | Closing
José Fonseca Pires, Director of PADIS and Professor at AESE
Vera Escoto, Alumna of the 30th PADIS | Senior Management Programme for Health Institutions
Senior Graduate Assistant in Internal Medicine.
Clinical Director of ULSAALE Hospital Healthcare Services.
Founder of the Home Hospitalization Unit of ULSNA in 2019.
Co-founder of SeRaro-AL.
Co-founder and President of the Rare Diseases Nucleus of ULS Alto Alentejo.
Author of the strategic and operational plan of the Rare Diseases Nucleus of ULS Alto Alentejo
Free, subject to prior registration.
