Frambu Resource Centre, Oslo, Norway
Joint Workshop of the EU-Funded projects INNOVCare (2015-2018, DGEMP) and RD-Action (2015-2018, DGSANTE)
Date: 12-13 April 2018
- To discuss and present case studies on the role of Centres of Expertise and European Reference Networks in supporting integrated care for rare diseases;
- To exchange on the progress of INNOVCare’s pilot of case management for rare diseases: implementation and evaluation;
- To discuss other key-issues to support the implementation of integrated health-social care for people living with a rare disease across Europe, with a focus on sustainability.
The workshop agenda can be accessed here.
- Introduction to the meeting, Raquel Castro, EURORDIS, Victoria Hedley, University of Newcastle
- Integrated care at the core of European Policy for Rare Diseases – Victoria Hedley, University of Newcastle
- INNOVCare pilot of case management for rare diseases - Dorica Dan, NoRO resource centre for rare diseases
- Centre of Expertise – example - Eduardo Tizzano, Hospital Universitario Valle Hebron
- European Reference Networks (ERNs) and the status quo of integrated care: Results of cross-ERN survey - Victoria Hedley, University of Newcastle
- Case Study ERN-EYE – Hélène Dollfus, ERN EYE
- Case Study ERN TRANSPLANTChild – Esteban Frauca, ERN TRANSPLANTChild
- Case Study ERN ITHACA – Bronwyn Kerr, ERN ITHACA
- Lessons learnt so far from the evaluation of social & economic impact of the INNOVCare pilot - Juliet Tschank, Zentrum für soziale Innovation, Vibeke Sparring; Karolinska Institutet
- Core indicators for ERNs: achievements to-date of the ERN Working Group on Assessment & Monitoring – Michelle Battye, eUROGEN
- Key issues for the implementation of integrated care for rare diseases: preliminary results of Interviews in MS – Irina Vana, Barbara Glinsner, Zentrum für soziale Innovation
Breakout Session Outcomes
The results of the breakout sessions can be accessed here.
Handouts distributed at the workshop
The workshop was attended by 65 participants from 22 countries. Attendees included representatives of policy makers - including national/regional competent authorities INNOVCare Advisory Group and former members of the Commission Expert Group on Rare Diseases - social services, healthcare providers from European Reference Networks, patient representatives and academics. You can find the list of participants here.
For more information on this workshop, please contact EURORDIS.