Agenda
CNA meeting 27-28 October 2015 EURORDIS, Plateforme Maladies Rares, 96 rue Didot, 75014 Paris
Tuesday 27 October – CNA Meeting 10.00-10.30
Welcome coffee, Introductions, Tour de table
10.30-11.30
Outcome of CNA survey, discussion & decisions, Anja Helm
11.30-12.30
Rare Disease Day 2016 Lara Chappell
12.30-13.00
INNOVCare project - innovation in social care provision for complex diseases, Raquel
Castro
13.00-14.00
Lunch
14.00-16.00
Centers of Expertise: National Actions and Member States process for ERN, Yann le Cam, Matt Johnson 30 min presentation, 1.5 hours discussion, all participants - New elements to know since EURORDIS Membership Meeting Madrid 2015 regarding the overall process, the operational criteria for ERN and HealthCare Providers – including Centers of Expertise, the different type of members – Full Members, Associate Members, Collaborative Members, the process the following years, etc - what the national alliances need to support & watch carefully at national level with their member patient groups, centers of expertise and Ministry of Health - discussion based on feedback from your experience and issues you wish EURORDIS to report to Commission and the Board of Member States
This workshop has been funded with support from the European Union’s Health Programme and by the Association Française contre les Myopathies – Téléthon (AFM). This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.
16.00-16.30
Coffee break
16.30-17.00
European Collaboration between National Competent Authorities on Pricing & Reimbursement: Coordination between EURORDIS and National Alliance, Yann le Cam, Jean-Louis Roux
17.00-17.30
Presentation of ACHSEs’ ongoing projects, Bianca Paslak, ACHSE, Germany
17.30-18.00
Joint Action for Rare Diseases (RD-ACTION) and the involvement of National Alliances into that 3-year project, Valentina Bottareli, Ariane Weinman
19.30
Dinner CNA & CEF L’Entrepot 7 Rue Francis de Pressensé, 75014 Paris
Wednesday 28 October CNA & CEF Joint meeting (from 09.30 to 13.00) 09.30-10.00
ECRD 2016 Edinburgh – Get involved! Sharon Ashton
10.00-11.00
The new RareConnect – Presentation + Why & how to get involved for NAs and EFs? Denis Costello
11.00-11.30
Coffee break
11.30-12.00
Inclusion of in-kind contributions into financial reports: Practice of EURORDIS, Guidance for EF & NA, Patrice Regnier
12.00-12.30
European Year of Rare Diseases, Valentina Bottarelli
12.30-13.00
Patient Voices Programme Plan, Sandra Courbier
13.00-14.00
Lunch
This workshop has been funded with support from the European Union’s Health Programme and by the Association Française contre les Myopathies – Téléthon (AFM). This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.
