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European Primary Immunodeficiencies Consensus Conference

European Primary Immunodeficiencies Consensus Conference
19 – 20 June 2006
Paul-Ehrlich-Institut, Langen, Germany

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Click here to go direct to the EU PID Consensus Statement, Recommendations & Report
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PERSENTATIONS

Welcome and Introduction Dr Ulrich Kalinke,
Div of Immunology, Paul-Ehrlich-Institut
Overview of PIDs in the EU, Goals and Objectives of the Meeting Prof Reinhold Schmidt, EFIS
The Benefits on an EU approach to Rare Diseases Mr Daniel Mann
Health Information Unit, European Commission
Addressing inequalities of access to healthcare in an expanded Europe
 François Houÿez, Health Policy Officer, EURORDIS
PID – a Public Health Issue? Prof Edvard Smith, Karolinska Institutet, Stockholm
Prevalence in the EU Prof Lennart Hammarström, Karolinska Institutet, Stockholm
Treatment Options: Immunoglobulin Therapy – the Major Therapy Choice in PID. Dr Hilary Longhurst, Barts and The London NHS Trust, London
Treatment Options: Bone Marrow Transplants/ Gene Therapy Prof Christine Kinnon, Institute of Child Health, London
Disparity of Diagnosis, Care and Treatment for PIDs between Member States of the EU Dr Anna Sediva, Charles University, Prague
Consequences of Delayed Diagnosis: Mortality/Morbidity Dr Fulvio Porta, University of Brescia
Consequences of Delayed Diagnosis: Quality of Life Dr Ann Gardulf, INGID
Consequences of Delayed Diagnosis: A Patient's Story Ms Jose Drabwell, IPOPI/ PIA
Consequences of Delayed Diagnosis: Health-care costs Prof Thomas Szucs, Health Economics Institut of Social & Preventive Medicine, University of Zurich
Evaluating Strategies for Early Identification of People with PIDs Prof Reinhold Schmidt, EFIS
Uses of Genetic Testing for PIDs Dr Jennifer Puck, University of California, San Francisco
The role of nurses in recognising PIDs Ms Amena Warner,
INGID
The importance or patient registries in Rare Diseases Mr Brian O’Mahony, Irish Hemophilia Society
Educational Outreach Efforts by:
Physicians: J-Project

Prof László Maródi, University of Debrecen Medical & Health Science Centre, Hungary

Patients: US Mr Fred Modell,
Jeffrey Modell Foundation
Patients: Europe Ms Anneli Larsson, PIO
Nurses: UK Dr Peter Vickers, University of Hertfordshire
What can we learn from the US – what are the positive effects from the US Consensus Conference? Dr Hans Ochs, University of Washington

 
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