Informal Care of a Person with a Rare Disease: we don't want unicorns, we just want to be heard
World

Informal Care of a Person with a Rare Disease: we don't want unicorns, we just want to be heard

SAPO Notícias26 August 2026 at 20:43

Family members and informal caregivers of people with rare diseases in Portugal are demanding better support policies for home care, denouncing that health and social systems neglect their needs. The article warns that, although the goal is to keep patients at home with adequate follow-up, the state does not invest sufficiently in support for those who take on these care responsibilities, resulting in unnecessary social hospitalizations and situations of abandonment. Advocates for this cause are only asking for active listening and recognition, rejecting the idea that these are impossible demands.

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