Programme

 

CONFERENCE PROGRAMME

 

Thursday 6 October 2016

 

08.00-16.00

Exhibition Set-up

Lounge

16.00-20.00

Arrival & Registration

Lounge

20.00

Buffet Dinner

Restaurant

 

Friday 7 October 2016

 

07.30-19.00

Registration

Lounge

08.00-18.00

Exhibition & Poster Display

Lounge

08.00-18.00

Film & Blog Stations

Energy 3

08.30-10.00

General Assembly (NMOs only)

Energy 1 & 2

10.00-10.30

Tea/Coffee - Exhibition Area – iPad raffle

Lounge & Energy 3

10.30-12.30      

General Assembly (NMOs only)

Energy 1 & 2

12.30-13.30

Buffet Lunch - Exhibition Area

Lounge & Energy 3

13.30-14.30

Organisation of Haemophilia Care in Norway  

Chair: Prof Pål Andre Holme, Oslo University Hospital, Norway

Energy 1 & 2

13.30-14.00          

Delivery of haemophilia care in Norway

Prof Pål Andre Holme, Oslo University Hospital, Norway

 

14.00-14.30      

Delivery of haemophilia care in other Nordic countries

Prof Jan Astermark, Lund University, Sweden

 

14.30-16.00

Industry Symposium 1 - Pfizer

Energy 1 & 2

16.00-16.30  

Tea/Coffee & Poster Session - Exhibition Area

Lounge & Energy 3

16.30-18.00

Industry Symposium 2 – Youth Debate

Energy 1 & 2

18.00-19.00

Updates on dental care and von Willebrand treatment

Chair: Prof Cedric Hermans, Saint-Luc University Hospital, Belgium

Energy 1 & 2

18.00-18.30          

Update on von Willebrand Treatment

Prof Michael Laffan, Imperial College London, United Kingdom

 

18.30-19.00      

Dental care

Dr Alison Dougall, Dublin Dental University Hospital, Ireland

 

19.30-21.00  

Welcome Reception and Buffet Supper

Helene Døscher, President, Norwegian NMO

Brian O’Mahony, President, EHC

Health Minister or Mayor of Stavanger TBC

Restaurant

   

 Saturday 8 October 2016

 

08.00-18.30      

Exhibition & Poster Display; Hospitality Desk

Energy 1 & 2

08.00-18.00

Film & Blog Stations

Energy 3

08.30-10.00

Industry Symposium 3 - CSL Behring

Energy 1 & 2

10.00-10.30

Tea/Coffee & Poster Session - Exhibition Area

Lounge & Energy 3

10.30-12.00

New Developments in Haemophilia Care

Chair: Brian O’Mahony, EHC President

Energy 1 & 2

10.30-11.00

Gene Therapy

Prof Edward Tuddenham, Emeritus Professor of Haemophilia UCL, UK

 

11.00-11.30

Bi- Specific antibody, antithrombin and other new developments

Prof Johannes Oldenburg, University Clinic Bonn, Germany

 

11.30-11.50

EAHAD perspective

Prof Cedric Hermans, Saint-Luc University Hospital, Belgium

 

11.50-12.00

Discussion

 

12.00-13.30

Industry Symposium 4 - Novo Nordisk

Energy 1 & 2

13.30-14.30      

Buffet Lunch - Exhibition Area

Lounge & Energy 3

14.30-16.00

Inhibitors

Chair: Prof Michael Makris, University of Sheffield, United Kingdom

Energy 1 & 2

14.30-14.50

Inhibitors in previously untreated patients

Prof Flora Peyvandi, University of Milan, Italy

 

14.50-15.10

Mild Haemophilia

                Prof Paul Giangrande, Consultant Haematologist, United Kingdom
 

15.10-15.30

Acquired haemophilia

                 Dr Laszlo Nemes, MD at National Haemophilia Center, Hungary
 

15.30-16.00

Panel discussion

Prof Flora Peyvandi, Prof Paul Giangrande, Dr Laszlo Nemes

 

16.00-16.30

Tea/Coffee & Poster Session - Exhibition Area

Lounge & Energy 3

16.30-18.00    

Industry Symposium 5 - Baxalta

Energy 1 & 2

18.00-18.30

WFH Update

Energy 1 & 2

19.00-19.15  

Coach Departure for Dinner

Front of Hotel

20.00-24.00

Conference Dinner

Red Sea House

   

 Sunday 9 October 2016

 

08.00-13.00      

Exhibition & Poster Display; Hospitality Desk

Lounge

08.30-10.00      

Clinical Debates

Chair: Dr Radoslaw Kaczmarek, Hirszfeld Institute Wroclaw, Poland

Energy 1 & 2

08.30-09.00

Gene therapy - a cure in 10 years, yes or no?

Edward Tuddenham, Emeritus Professor of Haemophilia UCL, UK

Prof Michael Makris, University of Sheffield, United Kingdom

 

09.00-09.30

Extended half-life factors will be the standard of care, yes or no?

Dr Angelika Batorova, University Hospital Bratislava, Slovakia

Prof Paul Giangrande, Consultant Haematologist, United Kingdom

 

09.30-10.00

Caesarian sections for carriers, yes or no?

Prof Rezan Khadir, Royal Free Hospital London, United Kingdom

Dr Danijela Mikovic, Blood Transfusion Institute of Serbia, Serbia

 

10.00-10.30    

Tea/Coffee & Poster Session - Exhibition Area

Lounge & Energy 3

10.30-12.00

Hepatitis C Symposium

Energy 1 & 2

12.00-13.30

Patient-Reported Outcome Data

Chair: Brian O’Mahony, EHC President

Energy 1 & 2

12.00-12.20

Haemophilia in Europe in 2016 - results of the EHC Survey

Brian O’Mahony, EHC President

 

12.20-12.40

Update on the CHESS project

Jamie O’Hara, HCD Economic, United Kingdom

 

12.40-13.00

Update on the PROBE survey data

Mark Skinner, Washington, USA

 

13.00-13.20

National registries

Dr Anneliese Hilger, Paul-Ehrlich-Institut, Germany  

 

13.20-13.30

Discussion

 

13.30-13.45

Closing Remarks - followed by light lunch

Brian O’Mahony, President, EHC

Helene Døscher, President, Norwegian NMO

Energy 1 & 2

 

 

 

SYMPOSIA PROGRAMMES – Energy Halls 1 & 2

 

Friday 7 October 2016

 

14.30-16.00 – Pfizer Symposium

partnering to change the world for people with haemophilia
Partnering to improve outcomes in Clinical trials, CLINICAL care and total health

Meeting Co-Chairs: Katherine Beaverson (Pfizer), and Pål Andre Holme (Norway)

TIME

TOPIC

FACULTY

14.30

Welcome and introduction

Co-Chair

14.35

Partnering to change the clinical trial landscape in rare disease: the role of industry, patients and patient advocacy groups

  • Will provide a snapshot of the rare disease landscape, and review Pfizer’s approach to Rare Disease R&D, reviewing the priority areas of focus
  • Highlight the unique challenges in Rare Disease such as disease diversity, expertise (availability and access), access to breaking science
  • Share Pfizer’s vision for Rare Disease to develop and sustain a robust portfolio through establishing the right networks, including collaborations with patients and PAGs, regulators, biotechnology companies, etc.
  • Review examples of innovative models of collaboration to deliver benefits with a focus on Pfizer initiatives
  • Provide an overview of the twinning partnership, including a snapshot of haemophilia care in the speaker’s country and introducing the speaker’s centre including the set-up and structure
  • Describe the goals of the speaker’s centre in participating in the WFH Twinning Programme
  • Share with delegates personal experiences, and the experience of the members of the wider care team, as a result of participating in the WFH Twinning Programme
  • Explore the challenges experienced by both partners throughout the course of the programme and how they overcame these challenges, including how each other’s strengths were recognised
  • Discuss personal thoughts on how the WFH Twinning Programme can help shape haemophilia care now and in the future, including any encouragement or tips for other centres interested in participating
  • Introduce the WFH Twinning Programme, explaining the two-way partnerships between haemophilia treatment centres and haemophilia organisation twins
  • Describe the aims of the programme in uniting developing haemophilia centres and advocacy groups, sharing information and best practices, and providing comprehensive care and support for those living with or managing a bleeding disorder
  • Review how the programme was established and has developed over the past 15 years with the support of Pfizer as sole sponsorProvide a brief introduction to the speakers who will be sharing their experiences of the WFH Twinning programme, including the objective of the sharing session
    • Provide a snapshot of the number of centres / organisations and areas that have benefitted from the programme to date
    • Share Pfizer’s commitment to the programme to date and hopes for the future
  • Following on from the WFH Twinning Presentation, the speaker will introduce his centre and his role, with a focus on positive experiences as a physiotherapist of being involved in the Twinning Programme
  • Introduce the role of the physiotherapist in haemophilia care, by providing an overview of haemophilic arthropathy and the debilitating effect of joint damage on people with haemophilia
  • Explore the benefits of physical activity and healthy lifestyle in improving joint health in people with haemophilia and its role in:
    • Improving joint health, muscle strength/mass, balance and coordination
    • Managing recovery after a haemarthrosis or orthopaedic procedure
    • Reducing the frequency of future bleeding episodes
    • Review considerations for encouraging physical activity in older patients, and how to overcome challenges associated with physical activity in this age group
    • Introduce the importance of access to specialist physiotherapy services for people with haemophilia, and the role of the Physiotherapy School for Haemophilia in supporting specialist training

Katherine Beaverson (Pfizer)

14.55

Partnering to improve global haemophilia care: WFH Twinning Programme case study

Matthew Harold (Pfizer)

15.05

Partnering to improve global haemophilia care: Pfizer and the WFH Twinning Programme

Jerzy Windyga (Poland)

Iglika Ignatova (Bulgaria)

15.30

Partnering to improve patient outcomes: the role of the physiotherapist

 

Sebastien Lobet (Belgium)

15.50

Q&A

Moderated by Co-Chairs

16.00

Meeting summary and close

Co-Chair

 

 

 

 

Friday 7 October 2016

16.30-18.00 – Youth Debate

THERE WILL BE BLOOD:

YOUNG PATIENTS VS. DOCTORS DEBATE - THE FUTURE OF HAEMOPHILIA CARE

16:30-18:00

Introduction

Mr Brian O’Mahony, EHC President

 

Debate 1:

Adults need prophylaxis

vs.

Adults don’t need prophylaxis

Mr Stefan Tasic, Serbia

 

Prof Cedric Hermans, Belgium, president of EAHAD

 

Debate 2:

We don’t spend enough time on inhibitor patients

vs.

We spend too much time on inhibitor patients who are a small % of our community

Mr Cristian Ungureanu, Romania

 

Prof Paul Giangrande, UK, EHC Medical Advisory group

 

Debate 3:

Access to hepatitis C treatment should be a priority for NMOs

vs.

It should not be a priority for NMOs

Mr Stephan Meijer, the Netherlands

 

Prof Mike Makris, UK, EHC Medical Advisory Group

 

Discussion

Mr Brian O’Mahony, EHC President

 

Conclusions and closing

Mr Brian O’Mahony, EHC President

 

This educational session was made possible by an unrestricted grant from Sobi.

 

Saturday 8 October 2016

 

08.30-16.00 – CSL Behring Symposium

Advancing the provision of haemophilia care in Europe – reviewing the patient need

Chair: Prof Paul Giangrande, UK

08.30

Welcome and introduction

Prof Paul Giangrande, UK

08.40

Haemophilia care: past, present and future

Prof Pål André Holme, Norway

09.00               

The patient’s view on the future provision of haemophilia care

Radosław Kaczmarek, Poland

Anders Molander, Sweden

09.20

Potential strategies for the improvement of access to care

Christian Hill, UK

09.35

Panel discussion and audience Q&A

Led by Prof Paul Giangrande

09.55

Concluding Remarks

Prof Paul Giangrande

10.00

Close of symposium

 

 

 

The symposium shall aim to address current standards of haemophilia treatment and what could be done to further improve the provision of care.

 

Starting with an outline of current achievements in haemophilia care and an outlook to the next few years from a medical perspective, patient experts will then present on their experiences in two different European countries and outline preferences for future provision of care.  A policy expert will add an overview on current issues related to patient access and potential ways for improvement. Based on the priorities for the patient community, the panellists conclude with a discussion with the audience on areas and options to further advance the provision of haemophilia care across Europe.

 

 

 

 

 

 

Saturday 8 October 2016

12.00-13.30 – Novo Nordisk Symposium

Taking care of your joints: challenges and opportunities of an active lifestyle

Chair: Pål Andrè Holme, MD, Norway

12.00- 12.05

Welcome and introduction

Pål Andrè Holme, MD, Norway

12.05-12.25

The need for physical activity in haemophilia and the importance of patient education

Piet de Kleijn, The Netherlands    

12.25-12.45

New insights on the impacts of living with haemophilia B: Results from a large US study

Dawn Rotellini, USA

12.45-13.05

Cycling from Utrecht to Stavanger: The importance of physical activity for people with a bleeding disorder – a project by the Netherlands Haemophilia Society (NVHP)

Jeshua van Deijck, The Netherlands Minette van der Ven, The Netherlands  

13.05-13.25

First experiences from the Nordic Haemophilia Patient Fitness Camp

Eva Zetterberg, MD, Sweden

13.25-13.30

Summary & conclusions

 

Pål Andrè Holme, MD, Norway

 

 

 

 

 

Saturday 8 October 2016

16.30-18.00 – Baxalta now part of Shire Symposium

The Pathway to a New Alliance for Prediction, Prevention, Eradication and Treatment of Inhibitors

Time

Topic

Speaker

16.30

Welcome and introduction

Alessandro Gringeri

16.40

Update on strategies to prevent the development of inhibitors

Günter Auerswald

16.55

Understanding inhibitor development in haemophilia A: strengths and limitations of registries

Kathelijn Fischer

 

17.10

Current thinking on immune tolerance induction in haemophilia A

Carmen Escuriola

17.25

Patient-treater alliance for personalisation of bleeding prevention and treatment in haemophilia with inhibitors

Jerzy Windyga

Jim O’Leary

17.50

Panel discussion/Q&A

All

18.00

Closing remarks

Alessandro Gringeri

 

The Faculty

Alessandro Gringeri, Senior Medical Director, Scientific Medical Expert, Global Medical Affairs Hematology, Baxalta (now part of Shire)

Günter Auerswald, Director of the Institute for Hemophilia and Thrombosis at the Center for Pediatrics and Adolescent Medicine at the Children's Hospital Professor Hess in the Klinikum Bremen-Mitte, Germany

Kathelijn Fischer, Paediatric Haematologist, Van Creveldkliniek, Division of Internal Medicine and Dermatology, University Medical Center Utrecht, The Netherlands

Carmen Escuriola, Director of the Haemophilia Centre Rhein Main - HZRM, Frankfurt-Mörfelden, Germany

Jerzy Windyga, Head, Department of Disorders of Hemostasis and Internal Medicine, Institute of Haematology and Transfusion Medicine, Warsaw

Jim O’Leary, Retired chartered accountancy firm practice manager, patient with severe Factor VIII deficiency with high responding inhibitors mutation Intron 22 inversion

 

 

 

 

 

 Sunday 9 October 2016

10.30-12.00 – Hepatitis C Symposium

Chair: Brian O’Mahony

10.30 – 10.45

Overview of hepatitis C in Europe

Dr Radoslaw Kaczmarek

10.45 – 11.00

HCV: Why treat? Overview of current treatment

Prof Geoffrey Dusheiko

11.00 – 11.15

HCV treatment so Far: National perspectives

Ireland:    Mr Brian O’Mahony

UK:          Ms Liz Carroll

Portugal: Mr Miguel Crato

11.15 – 11.30

Eradication of HCV: Patients’ perspective

                Mr  Gerry O’Reilly

11.30 – 12.00

Discussions, conclusions and call to action

     

                               

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