Rare diseases are a large, varied group of conditions, several thousand in total, defined by how few people they affect: no more than 5 in every 10,000 people in the EU for any single condition. Taken together, though, they add up to a major health issue touching millions of people worldwide.
People living with a chronic or rare condition need to be met as individuals, with real chances to tell their own story and take part in decisions about their health. In Italy, patients are involved in shared decision-making about their own care markedly less often than the European average, even though involving patients and healthcare professionals together is known to improve the quality of care itself.
The project
EmpRare per la salute recognises the central role of patients and caregivers, reinforcing the value of their everyday, lived experience through storytelling and public communication. A dedicated storytelling award, "Vi racconto una storia", invites people to share their own experience, while a public exhibition of Venetian lace and a participatory drafting process for the service charter on Lombardy, Italy and Europe's care ecosystem bring patients directly into shaping the systems that serve them.
The project also works to consolidate sustainable, systemic models that combine artistic practice, real health needs and the wider ecosystem of care, built on empowerment, involvement, participation and treating the patient as a genuine partner rather than a subject of care decided elsewhere.
Who the project is for
The project's direct beneficiaries include around 1,000 people taking part in the storytelling award, 200 people at the related conference and award ceremony held at the Ospedale San Donato, and 300 people involved in the Venetian lace exhibition and the participatory drafting of the care ecosystem's service charter.
Project name: EmpRare per la salute: conoscere per partecipare attivamente
Proposing organisation: RETE MALATTIE RARE APS
Area of intervention: Health & Welfare
Country: Italy