Sabato 4 e domenica 5 novembre avrà luogo a Budapest (Ungheria), presso il Danubius Hotel, il Meeting Annuale di FH Europe, il network europeo dei pazienti con ipercolesterolemia familiare. All'incontro sarà presente anche il Gruppo Italiano Pazienti FH (GIP-FH) e l'Associazione Nazionale Ipercolesterolemia Familiare (ANIF), rappresentata dal giornalista di Osservatorio Malattie Rare (OMaR) Francesco Fuggetta. L'evento è supportato da Sanofi Ungheria, Amgen Limited, Amryt Pharmaceuticals e Akcea Therapeutics.
PROGRAMMA DEL MEETING
Sabato 4 novembre:
- 12.00 Light lunch.
- 12.30 Welcome to all members of the Network by the Chair Jules Payne. Welcome to Hungary by a representative of the Hungarian FH organisation.
- 12.40 Introducing the Hungarian association and Hungary’s national health system.
- 12.50 Annual Report and forward review.
Review of FH Europe activity 2017 (including ‘heat map’/FH Awareness Day 24 Sept).
Review of accounts for the financial year: Jules Payne / Gunnar Karlsson.
Governance matters: Jules Payne.
Projected funding for 2017-2018: Gunnar Karlsson.
Update on register of members and receipt of news items.
- 13.45 Introduction to Slovakian and Dutch organisations: Branislav Vohnout, Marlieke Janssen ten Haaf (by video).
- 14.00 Coffee break (with healthy snacks) – arrival of sponsor representatives, Hanover Communications representatives and networking.
- 14.20 Welcome and introduction to full meeting.
- 14.30 Keynote Presentation I. Optimal Treatment of acute MI in paediatric population: Professor Belà Merkely.
- 15.00 Presentation of policy at national level – policy and awareness-raising training: Hanover Communications (proposed 2 consultants).
Welcome/Introduction & scene-setting (5 mins + 15 mins).
Comparing EU vs national competences in health policy (10 mins).
- 15.30 Dos and Don’ts of effective advocacy.
- 16.00 Presentation of the FH Europe Advocacy Toolkit.
This presentation to include FH Europe member case studies.
- 16.30 Ten minute break to arrange groups.
- 16.40 Face-to-face messaging workshop with members Francesco Fuggetta / Theodora Varkonyi-Weisz / Inese Maurina / Diana Maxwell.
To “develop a message platform to be used by national member as part of their outreach activities”, to develop messages/activity relating to rebutting statin arguments and ‘fake news’ /advocacy role play.
- 17.20 Final questions and answers.
- 17.30 Close and finish for the day.
- 19.15 Dinner in restaurant VakVarju Restaurant, Budapest, Paulay Ede u. 7, 1061 Hungary.
Domenica 5 novembre:
- 9.00 Report on outcome of survey of member organisations on PCSK9 reimbursement as an example of developments in influencing decision-makers on new and innovative treatments across member countries: Gunnar Karlsson.
- 9.20 Evolution of cholesterol management in the light of current (or new) guidelines: Prof. György Paragh.
- 9.50 Fourier Data presentation and news from the lipid scientific scene: Theodora Varkonyi-Weisz.
- 10.10 Coffee Break.
- 10.40 Collection of any completed travel forms and member organisation registration forms.
- 10.45 Report on e-media in member countries: Francesco Fuggetta and Inese Maurina.
- 11.10 Current status of Paediatric and other Registers – differences in systems and possibility of inter- operability across national boundaries (educational item followed by discussion): Jules Payne / Gabriele Hanauer-Mader.
- 11.25 Discussion and review of possible organising committee for 2018 network meeting.
- 11.45 Any other business.
Location and date of 2018 meeting.
Venue/event feedback form / Meeting close.
- 12.00 Light lunch.
Mid-day onwards - Departure of members who are flying out in the early afternoon.