Cluj-Napoca, Romania
Date: 1-2 June 2017
Organised by EURORDIS
Goal
- To discuss key-issues to support the implementation of integrated health-social care for people living with a rare disease across Europe
- To exchange on INNOVCare’s pilot of case management for rare diseases: design, implementation and evaluation methodology
Agenda
The workshop agenda can be accessed here.
Presentations
- Update on INNOVCare: bridging the gap between health, social & local care for rare diseases, Raquel Castro, EURORDIS
- Juggling care and daily life: The balancing act of the rare disease community - results of INNOVCare/EURORDIS Rare Barometer survey on the impact of rare diseases on daily life, (complete survey booklet here), Raquel Castro, EURORDIS
- Progress on INNOVCare pilot of case management for rare diseases, Dorica Dan, NoRo resource centre
- Evaluation of the social impact of the INNOVCare pilot, Juliet Tschank, Zentrum für Soziale Innovation (ZSI)
- Evaluation of the economic impact of the INNOVCare pilot, Vibeke Sparring, Karolinska Institutet
- Ways to take the next steps towards holistic care, Nicol Gruber, Irina Vana, Zentrum für Soziale Innovation (ZSI)
Breakout sessions
The results of the breakout sessions can be accessed here.
Posters
You can find the posters from the poster session at NoRo here.
Photos
You can find photos from the workshop here.
Participants
The workshop was attended by 46 participants from 18 countries all over Europe, including representatives of national/regional competent authorities (INNOVCare Advisory Group), social services, patient representatives, healthcare providers, social workers and academics. You can find the list of participants here.
For more information on this workshop, please contact EURORDIS.