Programme of the ECRD 2020

Rare diseases should not be forgotten in the COVID-19 pandemic. The health of people living with a rare disease should not be left to luck or chance. The ECRD 2020 theme “The rare disease patient journey in 2030” recognises that the next decade holds great potential for improvement and that while we cannot predict the future, we all have a role in preparing for it. As the EU shapes its future policy and spending frameworks, ECRD 2020 served as an opportunity to press the ‘pause button’ and take the time to co-create policy options today that can lead to a better patient journey in 2030 and beyond.


Conference participants heard from world experts on: future trends in diagnosis, rights to access healthcare and medicines, care delivery, digital health, the development, assessment and appraisal of therapies and the triple A’s: accessibility, affordability and availability of treatments. The collaborative dialogue, learning and online interactivity that took place during ECRD 2020 will form part of the groundwork to shape the national and international rare disease policies of the future. ECRD 2020 put a spotlight on emerging trends in best practices, promising technologies and cutting-edge thinking across the six conference themes.


You are invited to continue your involvement in preparing your future in the Rare 2030 Foresight Study throughout the year!


Full content is still available on demand for one full year until May 2021! If you missed the opportunity to join the live online conference, you can still access recordings of all sessions by registering here.
Here is a taster of what you will be able to access:

Programme Committee

Programme Committee Co-chairs

Milan Macek
Motol University Hospital and Charles University Prague

Maria Montefusco
Rare Disease Sweden

Violeta Stroyanova – Beninska
Committee on Orphan Medicinal Products, European Medicines Agency

Programme Committee Members & Theme Leaders

Diego Ardigo 
Chiesi Farmaceutici

Dimitrios Athanasiou
World Duchenne Organisation

Matt Bolz-Johnson

Valentina Bottarelli

Virginie Bros-Facer

Sofia Douzgou

Holm Graeßner
Solve-RD and ERN-RND

Robert Hejdenberg

Virginie Hivert

Jessica Imbert 
MedTech Europe

Julian Isla 
Dravet Syndrome European Federation

Justina Janusevicene
Lithuanian University of Health Sciences

Daria Julkowska
European Joint Programme on Rare Diseases

Anna Kole 

Kristina Larsson
European Medicines Agency


Yann Le Cam

Brian O’Connor
ECH Alliance

Ana Palma

Anne Pariser
National Institutes of Health

Christine Patch
Genomics England

Alberto Pereira

Vinciane Pirard

Ana Rath

Andrea Ricci

Jayne Spink
CEO, Genetic Alliance UK

Birute Tumiene
Institute of Biomedical Sciences, Vilnius University

Theme Supporters

Simone Boselli

Marta Campabadal

Maria Cavaller

Denis Costello

CML Advocates Network

Gulcin Gumus

Ines Hernando

Clara Hervas

Outreach Committee

Carita Åkerblom
Finnish Network for Rare Diseases

Simona Bellagambi
Rare Diseases Italy (UNIAMO)

Danas Ceilitka
Association for Children Rare Diseases

Carolina Cobos

Helga Gruden

Jurrat Hasan
Genetic Alliance UK

Lene Jensen
Rare Diseases Denmark (Sjaeldne Diagnoser)

Mirjam Mann

Martina Michalova
Rare diseases Czech Republic


Cor Oosterwijk

Jean Philippe Placon
Alliance Maladies Rares

Ingeborg Vea
Norwegian Rare Disease National Alliances (FFO)

Miroslaw Zielinski

Baiba Ziemele
Latvian Alliance for Rare Diseases

Organised by:

Co-organised by:


With the support of

AFM logo

EU funding logo