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Prevention and Control of Viral Hepatitis: The role and impact of patient and advocacy groups in and outside Europe

Lucca,  Italy,  March 13-14, 2008

Viral Hepatitis  Prevention  Board

European  Liver Patients  Association

Meeting

Thursday, March 13, 2008

 

Session 1   Opening and objectives

 Chair:  Pierre Van Damme - Nadine Piorkowsky

     

09.00 - 09.30

  • Welcome and opening 
  • Introduction of the VHPB 424Kb (.pdf) P. Van damme
  • Objectives of the meeting:
  • Provide an overview of the activities, role, rationale and impact of patient and advocacy groups in Europe and the US in terms of prevention and control of viral hepatitis.
  • Give examples of experiences of international and national patient and advocacy groups in Europe and the US.
  • Identify challenges and thresholds experienced by liver patient groups regarding their role and impact on prevention and control of viral hepatitis.
  • Discuss lessons learnt and opportunities.
  • Discuss the role and impact of various partner agencies and organisations.
  • Review of the meeting programme

Session 2   Viral hepatitis prevention in Europe

Chair: Pierre Van Damme - Nadine Piorkowsky

 

09.30 – 10.00    

Update on prevention and control of hepatitis B in WHO European Region. 1Mb (.pdf)

Liudmila Mosina (WHO/EURO) 

 

 

Session 3   Role and impact of patient and advocacy groups

Chair: Daniel Shouval – Paolo Bonanni

 

10.00 – 10.30    

Prevention and control of viral hepatitis; the role and impact of liver patient groups in Europe: general considerations. 309Kb (.pdf)

Nadine Piorkowsky (European Liver Patient Association)

 

10.30 – 11.00    

European patient groups for rare diseases. 810Kb (.pdf)

Michele Lipucci di Paola (European Organisation for rare diseases)

 

11.00 – 11.20     Coffee Break

 

11.20 – 11.50    

Prevention and control of viral hepatitis in the US; the National Viral Hepatitis Roundtable. 1.3Mb

Deborah Wexler (Immunization Action Coalition) 

 

11.50 – 12.10    

Relationship between industry and patient organisations: European Federation of Pharmaceutical industries and associations (EFPIA) ethical code. 512Kb (.pdf)

Luc Hessel (European Vaccine Manufactures)

 

12.10 – 13.30     Lunch

 

Session 4   Role and impact of patient and advocacy groups: country presentations

Chair : John Ward – Selim Badur

 

13.30 – 13.50    

Belgium: Carrefour Hépatites-Aide et Contact // Vereniging voor hepatitis C patienten. 946 Kb (.pdf)

Muriel Colinet // Marie-Fabienne Van den Berghe

 

13.50 – 14.10    

Bulgaria: Hepasist. 5.9Mb (.pdf)

Stanimir Hasurdjiev

 

14.10 – 14.30    

Croatia: Hepatos. 356Kb (.pdf)

Tatjana Reic

 

14.30 -     14.50

Germany: Deutsche Leberhilfe. 54Kb (.pdf)

Achim Kautz

 

14.50 – 15.10    

Italy: EpaC. 635Kb (.pdf)

Ivan Gardini

 

15.10 -     15.30 Coffee Break

 

15.30 – 15.50    

Poland: Prometeuze. 75Kb (.pdf)

Ilona Sikorska

 

15.50 – 16.10    

The Netherlands : National Hepatitis Centre. 77Kb (.pdf)

Paula Van Leeuwen

 

16.10 – 16.20    

UK: British Liver Trust . 470Kb (.pdf)

Sarah Matthews

 

16.20 – 16.40    

US: The Hepatitis Foundation International. 62Kb (.pdf)

Thelma King Thiel

           

16.40 – 17.00    

Advocating for immigrant communities at risk. 1.3Mb (.pdf)

Samuel So

 

17.00 – 17.10    

Summary by the chairs and close of the day

 

 

 

Friday, March 14, 2008

 

 

Session 4   Role and impact of patient and advocacy groups: country presentations (continued)

Chair : Craig Shapiro – Wolfgang Jilg

 

 

08.30 – 08.50    

France: SOS Hepatites, National Federation.

Pascal Melin

 

 

Session 5   Initiatives to get attention and increase awareness on prevention and viral hepatitis

Chair: Craig Shapiro – Wolfgang Jilg

 

08.50 – 9.15     

The European Immunization Week. 857Kb (.pdf)

Liudmila Mosina (WHO/EURO)

 

9.15 – 09.40     

World Hepatitis Day (WHD). 57Kb (.pdf)

Charles Gore

 

09.40 – 10.05    

Hepatitis B priority area for European policy; Call for action by the European Parliament. 82Kb (.pdf)

Charles Gore

 

10.05 – 10.20     Coffee break

 

 

 

 

Session 6A  ParalIel break-out session Group I 

Chair: Steven Wiersma – Daniel Lavanchy

     

10.20 – 11.30    

Topic: Identification of weaknesses; limitations and thresholds of  impact of patients groups on control and prevention of viral hepatitis

 

Session6B  ParalIel break-out session Group II

Chair: Françoise Roudot-Thoraval - David Goldberg

     

10.20 – 11.30    

Topic: Identification strengths and opportunities of liver patients groups towards the control and prevention of viral hepatitis

 

Session 7   Feedback break-out sessions 

 

11.30 – 11.45     Report of Group I

 

11.45 – 12.00     Report of Group II

 

12.00 – 14.00     Lunch

 

Session 8   Conclusions of the meeting

Chair:  Johannes Hallauer – Nicole Guerin

     

14.00 - 15.00    

Presentation of the VHPB meeting conclusions. 76Kb (.pdf)

David FitzSimons

 

15.00 - 15.30     Discussion

 

15.30       Close of the meeting

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