EURORDIS Membership Meeting (EMM) 2016
May 2016
In 2016, EURORDIS held its annual conference in Edinburgh, Scotland from 26-28 May. The conference welcomed not only its members, but also various organisations and companies, resulting in a total of around 750 participants.
As part of the RARE-Bestpractices project, EURORDIS organised a workshop on “Good clinical practice in the context of European Reference Networks” during its Membership Meeting held on 26 May 2016, in Edinburgh.
The annual EURORDIS Membership Meeting brought together approximately 200 attendees, primarily leaders of European patient organisations, but also including researchers, health professionals, policymakers, and industry representatives.
- Agenda
- Activity Report 2015 EURORDIS
- Financial Report 2015 EURORDIS
- EURORDIS Extraordinary General Assembly 2016
Workshop 1: European Reference Networks (ERN) and ePAGs
Speaker – Matt Johnson
- European Patient Advocacy Groups (ePAGs), Matt Johnson, Healthcare and Research Director, EURORDIS
- ERN services: A Patient Case Study, Matt Johnson
- ERN State of the Art, Matt Johnson
Workshop 2: Rareconnect
Speakers – Robert Pleticha, Denis Costello & Michael Brudno
- rareconnect.org: A EURORDIS Initiative
- PhenomeCentral: an integrated portal for sharing patient phenotype and genotype data for rare genetic disorders, Michael Brudno, SickKids
Workshop 3: INNOVCare, Rare Barometer & Advocacy
Speakers – Raquel Castro, Sandra Courbier, Dorica Dan, Stephanie Joker Nielsen & Annette Scoppetta
- Advocacy took kit to integrate Rare Diseases into social services and policies, Raquel Castro, Social Policy Senior Manager, EURORDIS
- INNOVCARE & Rare Barometer survey on the daily needs of people living with a rare disease and their families, Sandra Courbier
- Advocate for health services to play an active role: European Expert Group Recommendations, Dorica Dan, Romanian National Alliance for Rare Disease
- INNOVCare Project, Raquel Castro
- Navigators help PLWRD manage, Stephanie Joker Nielsen, Project Manager, Rare Diseases Denmark
- Social Innovation, Annette Scoppetta
Workshop 4: ERNs, Research & Clinical Guidelines
Speakers – Domenica Taruscio, Karen Ritchie, Jenny Harbour, Lorna Thompson, Dr. Avril Kennan & SIlvia van Breukelan
- Rare Disease: Collecting best practices and research recommendations, Karen Ritchie, Jenny Harbour, Lorna Thompson, Healthcare Improvement Scotland
- What makes a good clinical guideline?
- The power of networks, Dr. Avril Kennan, DEBRA International
- Patient involvement in the development of rare disease standards of care, Silvia van Breukelan, Dutch National Alliance for Rare and Genetic Diseases
- Engaging patients in translational research, Karen Ritchie, Jenny Harbour, Lorna Thompson, Healthcare Improvement Scotland
- Best practice guidelines in the context of rare disease ERNs, Domenica Taruscio, National Centre for Rare Disease Italy