In the labyrinth of care: this the living condition of patients with a chronic or rare disease, but also of their families and caregivers. This is almost one in three Italians, 22 million with at least one chronic disease, including about 8.8 million with a severe disease form; to These, about 2 million people diagnosed with a rare disease should be added. On the other hand, the group of family caregivers is represented by as many as 8.5 million citizens, who often give up important spaces in their lives, whether working, social or emotional. Taking a snapshot of this universe of people is Cittadinanzattiva's 21st Report on chronicity policies, entitled "In the labyrinth of care", presented yesterday in Rome at the Ministry of Health. The report comes from interviews with 97 member associations of Cittadinanzattiva's National Coordination of Associations of the Chronically and Rarely Ill and 3,552 patients with chronic and rare diseases, family members and their caregivers. A focus is devoted to the stories of family caregivers, 170 people who represent the daily experience, difficulties and needs of those caring for a family member with a chronic or rare disease, disability or any other long-term care need.
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