18th CNA Workshop agenda 28 may 2015
18th CNA Workshop Thursday 28 May 2015, 9.30-13.30 Room Cibeles, Hotel Rafael Atocha, Madrid
Agenda 09.30-10.30
Rare Disease Day 2016, Lara Chappell
10.30-11.00
Best practices in governance on National Plans, Valentina Bottarrelli
11.00-11.30
Coffee break
11.30-12.00
Update on data protection, Anna Kole, EURORDIS
12.00-12.30
Key role of National Alliances to be ready for the call for European Reference Networks (ERN) at end 2015, Yann le Cam
Need for National Centres of Expertise to be officially recognized by Member States
Support of Member States to the leaders of the ERN
12.30-12.40
Update of common goals & mutual commitments, Zoe Alahouzou
12.40-12.50
EURORDIS Social Policy Advisory Group - brief update following launch meeting, Raquel Castro
12.50-13.00
Presentation of the new Rare Connect Governance Model, Denis Costello
13.00-13.30
Update on recent activities of the Spanish Alliance for Rare Diseases FEDER, Alba Ancochea, FEDER
13.30-14.30 14.30-18.00 18.00-19.00 18.45 19.30
Lunch Rare Diseases International Launch Meeting Rare Diseases International Launch Cocktail Departure Coaches for CNA dinner CNA dinner at the Restaurant Corral de la Moreria - Flamenco Show (please register!)
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.
Agenda 09.30-10.30
Rare Disease Day 2016, Lara Chappell
10.30-11.00
Best practices in governance on National Plans, Valentina Bottarrelli
11.00-11.30
Coffee break
11.30-12.00
Update on data protection, Anna Kole, EURORDIS
12.00-12.30
Key role of National Alliances to be ready for the call for European Reference Networks (ERN) at end 2015, Yann le Cam
Need for National Centres of Expertise to be officially recognized by Member States
Support of Member States to the leaders of the ERN
12.30-12.40
Update of common goals & mutual commitments, Zoe Alahouzou
12.40-12.50
EURORDIS Social Policy Advisory Group - brief update following launch meeting, Raquel Castro
12.50-13.00
Presentation of the new Rare Connect Governance Model, Denis Costello
13.00-13.30
Update on recent activities of the Spanish Alliance for Rare Diseases FEDER, Alba Ancochea, FEDER
13.30-14.30 14.30-18.00 18.00-19.00 18.45 19.30
Lunch Rare Diseases International Launch Meeting Rare Diseases International Launch Cocktail Departure Coaches for CNA dinner CNA dinner at the Restaurant Corral de la Moreria - Flamenco Show (please register!)
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.
