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
Co-organised by EURORDIS (INNOVCare) and UNEW (RD-Action)
Goals
- 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.
Agenda
The workshop agenda can be accessed here.
Presentations
- 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
- Factsheet on Intgreated care for Rare Diseases
- Case managers for rare diseases: Roles and training outlines
Participants
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.
