Programme

Programme at a glance:

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Theme Programmes:

The content of all Theme Programmes are subject to change.

Theme 1: Structuring the Research & Diagnosis Landscape

Theme 3: The Digital Patient

Theme 4: Quality of Life: making what matters, matter

Theme 5: Economical Perspectives in Rare Diseases

Theme 6: Global Rare Equity: Are we there yet?

Programme Committee

Programme Committee Co-chairs

Vinciane Pirard

Co-Chair Joint TF on orphan drugs and rare diseases – EFPIA-EuropaBio, Sanofi Genzyme, Netherlands

Rainer Riedl

President, Pro Rare Austria, Austria

Justina Januševičienė

Executive for the development of health care technologies and innovations, Lithuanian University of Health Sciences, Lithuania

 

 

 

 

 

 

 

Programme Commitee members

Ana Rath
Director, Orphanet, France

Emmanuel Chantelot
Executive Director, Head of Government Relations and Policy Europe, EUCOPE & Celgene, Belgium

Dr Miriam Dalmas

Consultant in Public Health Medicine, Ministry for Health, Malta

Olaf Riess

Vice-President, ESHG and Head of Institute of Medical Genetics and Applied Genomics, University of Tübingen, Germany

Violeta Stoyanova Beninska

Senior Clinical Assessor, Medicines Evaluation Board (Netherlands), Member COMP and Expert CNS WP at EMA, Netherlands

Kate Bushby

Professor of Neuromuscular Genetics, Newcastle University, United Kingdom

Valentina Bottarelli

Public Affairs Director & Head of European and International Advocacy, EURORDIS, Belgium

Till Voigtländer

Chair ERN Board of Member States, Clinical Institute of Neurology, Medical University of Vienna, Austria

Matt Bolz-Johnson

Healthcare and Research Director, EURORDIS, Germany

Daria Julkowska

Executive Programme Manager, E-Rare, France

François Houÿez

Treatment Information and Access Director, Health Policy Advisor, EURORDIS, France

Jordi Llinares Garcia

Head of Orphan Medicines at the European Medicines Agency, EU

Julian Isla

Data and Artificial Intelligence Resource Manager, Microsoft and Dravet Syndrome European Federation (DSEF), Spain

Lene Jensen

CEO, Rare Diseases Denmark, Denmark

Anne Pariser

Deputy Director of the Office of Rare Diseases Research (ORDR), NCATS, NIH, USA

Virginie Hivert

Therapeutic Development Director, EURORDIS, France

Luca Pani

Professor of Clinical Psychiatry, University of Miami, USA

 

Theme leaders

Daria Julkowska

Executive Programme Manager, E-Rare, France

Lauren Roberts

National Co-ordinator, SWAN UK, United Kingdom

François Houÿez

Treatment Information and Access Director,

Health Policy Advisor, EURORDIS, France

Wim Goettsch

Executive Board Chair, EUnetHTA, Netherlands

Jordi Llinares Garcia

Head of Orphan Medicines,

European Medicines Agency, EU

Julian Isla

Data and Artificial Intelligence Resource Manager,

Microsoft and Dravet Syndrome European Federation (DSEF), Spain

Justina Januševičienė

Executive for the development of health care technologies and innovations,

Lithuanian University of Health Sciences, Lithuania

Lene Jensen

CEO, Rare Diseases Denmark, Denmark

Ursula Holtgrewe

Head of Work & Equal Opportunities,

Zentrum für Soziale Innovation, Austria

Michael Schlander

Professor of Health Economics at the

University of Heidelberg, Germany

Ruediger Gatermann

Director Health Policy & External Affairs Europe,

CSL Behring, Germany

Durhane Wong-Rieder

President and Chief Executive Officer,

Canadian Organization For Rare Disorders

Dr Hugh Dawkins

Director, Office of Population Health Genomics

(OPHG), Australia

 

 

Outreach Committee

Alba AncocheaCEO, FEDER, Spain
Anja HelmSenior Manager of Relations with Patient Organisations, EURORDIS, France
Gábor PoganyExecutive Vice President, Hungarian Federation of People with Rare and Congenital Diseases, Hungary
Irina MiasnikovaExecutive Director, Russian Association for Rare Diseases, Russia
Lene JensenCEO, Rare Diseases Denmark,  Denmark
Mariana CamposMembership and Public Engagement Manager,Genetic Alliance UK, United Kingdom
Martina MichalovaAssociate Producer and Office Manager, Czech Association, Czech Republic
Olivier MenzelPresident and founder, BLACKSWAN Foundation, Switzerland
Simona BellagambiVolunteer and project collaborator at UNIAMO FIMR onlus, Italy

Ulrike Holzer

Vice Chairwoman, Pro Rare Austria, Austria