We are pleased to announce “VocifeRare – the voice of rare patients,” an event organized by UNIAMO Italian Federation of Rare Diseases and co-funded by Foundation with the South. The event will take place on October 26, 2018, in Cagliari at the SEARCH Auditorium, Municipal Historical Archive, Largo Carlo Felice 2, from 11:00 to 17:30.
The project is exclusively aimed at rare disease patient associations in Sardinia and promotes awareness, training, support, and communication initiatives to:
- Enhance patient organization activities
- Improve conditions for rare disease patients in Southern regions through individual, organizational, and community empowerment.
The goal is to strengthen associations’ operational capabilities in:
- Relationship building
- Communication channels
- Social reporting
- Social responsibility
- Care and social research to promote shared actions improving care for rare disease patients and their families.
The program will include presentations on:
- Rare Disease Patient Care in Sardinia Region (by Sardinia Rare Disease Coordination Center and local patient associations)
- UNIAMO FIMR projects
- Third Sector Reform (by CSV Sardegna Solidale expert)
- “After Us” Reform tools (by National Notary Council)
- Independent Living perspectives (by Anffas Sardinia President)
More info :Â http://www.uniamo.org/
