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AGENDA
 Day 1 : Monday 19 June 10.00 – 16.50
SESSION 1 PIDs – AN EU PUBLIC HEALTH ISSUE
| Moderator: Prof Jose Luis Valverde, European Parliament Representative to EMEA
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SESSION 2 PIDs – WHAT ARE PRIMARY IMMUNODEFICIENCIES?
| Moderators: Dr Teresa Espanol, IPOPI and Ms Amena Warner, INGID
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TIME |
TOPIC |
SPEAKER |
| 13.20 |
Overview of Primary Immunodeficiency in adults and children |
Dr Helen Chapel, John Radcliff Infirmary, Oxford |
| 13.40 |
Prevalence in the EU |
Prof Lennart Hammarström, Karolinska Institutet, Stockholm |
| 14.00 |
Treatment Options: Immunoglobulin Therapy – the Major Therapy Choice in PID. |
Dr Hilary Longhurst, Barts and The London NHS Trust, London |
| 14.20 |
Treatment Options: Bone Marrow Transplants/ Gene Therapy |
Prof Christine Kinnon, Institute of Child Health, London
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| 14.40 |
Disparity of Diagnosis, Care and Treatment for PIDs between Member States of the EU |
Dr Anna Sediva, Charles University, Prague |
| 15.00 |
Refreshment Break |
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SESSION 3 PIDs – CONSEQUENCES OF MISSED OR DELAYED DIAGNOSIS
| Moderators: Ms Bianca Pizzera, IPOPI Chairperson and Prof. Lennart Hammarström, Karolinska University, Stockholm
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Day 2 : Tuesday 20 June 09.00 – 16.15
SESSION 4 PUBLIC HEALTH INTERVENTIONS TO ADDRESS PIDs
| Moderators: Prof. Edvard Smith, Karolinska Institutet, Stockholm and Mr David Watters, Executive Director, IPOPI
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TIME |
TOPIC |
SPEAKER |
| 09.00 |
Evaluating Strategies for Early Identification of People with PIDs |
Prof Reinhold Schmidt, EFIS |
| 09.20 |
Uses of Genetic Testing for PIDs |
Dr Jennifer Puck, University of California, San Francisco |
| 09.40 |
The role of nurses in recognising PIDs |
Ms Amena Warner,
INGID |
| 10.00 |
Refreshment Break |
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| 10.20 |
The importance or patient registries in Rare Diseases |
Mr Brian O’Mahony, Irish Hemophilia Society |
| 10.40 |
Educational Outreach Efforts by:
Physicians: J-Project
Patients: US
Patients: Europe
Nurses: UK
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Prof László Maródi, University of Debrecen Medical & Health Science Centre, Hungary
Mr Fred Modell,
Jeffrey Modell Foundation
Ms Anneli Larsson, PIO
Dr Peter Vickers, University of Hertfordshire |
| 11.40 |
What can we learn from the US – what are the positive effects from the US Consensus Conference? |
Dr Hans Ochs, University of Washington |
| 12.00 |
Lunch |
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SESSION 5 DEVELOPMENT OF RECOMMENDATIONS & CONSENSUS FOR PUBLIC HEALTH ACTION TO ADDRESS PIDs IN THE EU
| Group Chairs: Dr Helen Chapel, Dr Esther de Vries, Prof Reinhold Schmidt, (each chair Group A, B and C)
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TIME |
TOPIC |
SPEAKER |
| 1330 |
Breakout Groups
Group A- Awareness and Education (Chair: Dr Helen Chapel)
Group B- Screening and Diagnosis (Chair: Dr Esther de Vries)
Group C- Treatment and Care (Chair: Prof Reinhold Schmidt)
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| 15.00 |
Refreshment Break |
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| 15.15 |
Group Reports and Recommendations
Group Chairs (15 minutes each)
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| 16.00 |
Meeting closure, wrap up and thanks
|
Dr Helen Chapel |
| 16.15 |
End of Conference |
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