Programme

Detailed programme and Presentations:

Below is a list of the Themes from ECRD 2018. You can find the Theme description and electronic versions of the presentations given in each Theme by clicking on the theme title to reveal the links.

Theme 2: Breakthrough Medicines On the Horizon: Regulators, Health Technology Assessment (HTA) Experts And Patients Working Together
Theme 3:The Digital Patient

Theme 3 Programme

Session 0301
Vytautas Kašėta – The digital patient
David Martín Lindström – Cybersecurity in Healthcare
Linn Parrish – The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease
Ivo Ramos – Atos Research & Innovation

Session 0302
Orion Buske – Why is sharing data with researchers so important?
Marc Hanauer –  Health sensitive data in real life
Marius Pareščius – Cybersecurity

Session 0303
Zoi Kolitsi – Patient centric European electronic patient records – from promise to delivery?
Henrique Martins – EC Digital Single Market Strategy
Tapani Piha – EU Strategy for Digital Transformation in Cross-Border Healthcare

Session 0304
Magdalena María Marx  – Results of RD-Action WP5: Steering, maintaining and promoting the adoption of Orphacodes across MS
Anna Rath – Interoperability forrare diseases data across fields and countries
Elisa Salamanca- Interoperability  at national & European level
Rima Nabbout – An update on virtual care in rare and complex epilepsies
Sofia Douzgou – How virtual health care is happening in ERN-ITHACA

Session 0305
Claudia Crocione – Developement of the VASCERN Mobile APP
Elin Haf Davies – Case studies of remote patient monitoring: use of wearables 
Kristina Larsson – Qualification of Novel Methodologies: A key regulatory tool to facilitate drug development
Elizabeth Vroom – Duchenne Data Platform
Julian Isla – Artificial intelligence for RD – The diagnosis odyssey

Download programme at a glance

Shire Roundtable Satellite Symposium

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