Mr Torben Grönnebaek
Mr John Dalli or Andrzej Rys, European Commission (eingeladen)
Gesundheitsministerium, Polen
Mr Marek Twardowski, Staatssekretär für Gesundheit, Polen (eingeladen)

• Where are we?

  • Terkel Andersen, President of Eurordis

• State of the art of services in Europe: where are the problems?

  • Dr Ségolène Aymé, Leader of the Task Force on Rare Diseases

• The German plan for rare diseases: a development in progress

  • Prof Dr. Johann Matthias Graf von der Schulenburg, Director, Forschungsstelle für Gesundheitsökonomie, Leibnitz Universität

Thema 2: Expertise-Zentren und europäische Referenznetzwerke

The Added Value of Centres of Expertise

Introduction

Yann Le Cam, Eurordis

Round table with:

• Prof Fons J.M. Gabreels, the Netherlands (invited)
• Stein Are Aksnes, Directorate for Health and Social Affairs, Norway
• Cristina Rusu, Romania

Help Lines for Rare Diseases

Orphan-Drug-Entwicklung, Forschungspläne in der Pädiatrie und neuartige Therapien

Medizinische Aufklärung: Training vor dem Universitätsabschluss

Das Potenzial von europäischen Referenznetzwerken

• European perspective

  • Dr Frederic Sicard (Co-chair High Level Group on Care and Medical Services)

• Examples of Reference Networks

  • Krystyna Chrzanowska, Poland - Dyscerne Project
  • Prof Thomas Wagner, ECORN-CF, Germany

Die optimale Verwendung des Gentest-Budgets

Not all tests are useful. Are we wasting resources?

Bruno Dallapiccola, Istituto CSS Mendel, Italy

Cross Border genetic testing

To be confirmed

Undiagnosed Rare Diseases

Milan Macek, Department of Biology and Medical Genetics, Charles University, Czech Republic

Verbesserter Zugang zu Orphan-Medikamenten

EUnetHTA working group on Monitoring emerging/new technology development and prioritisation of HTA

Claudia Wild,  Ludwig Boltzman Institute of Health Technology Assessment, Vienna, Austria

The point of view of the industry

zu bestätigen

The point of view of a national authority

Stanislas Primozic, Agency for Medicinal Products and Medical Devices of the Republic of Slovenia (eingeladen)

Medizinische Aufklärung: Patientenorganisationen und ihre Aufgabe

Poster session

Begrüßungsrede

Mrs Maria Kaczynska
Mr John Dalli
Mr Terkel Andersen