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:

Programmausschuss

Mitvorsitzende des Programmausschusses


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

Mitglieder des Programmausschusses & Themenleiter


Diego Ardigo 
Chiesi Farmaceutici


Dimitrios Athanasiou
World Duchenne Organisation


Matt Bolz-Johnson
EURORDIS


Valentina Bottarelli
EURORDIS


Simone Boselli
EURORDIS


Virginie Bros-Facer
EURORDIS


Sofia Douzgou
ESHG


Holm Graeßner
Solve-RD and ERN-RND


Inka Heikkinen
DIA


Robert Hejdenberg
Agrenska


Ines Hernando
EURORDIS


Virginie Hivert
EURORDIS


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 
EURORDIS


Kristina Larsson
European Medicines Agency

 


Yann Le Cam
EURORDIS


Brian O’Connor
ECH Alliance


Ana Palma
EUCOPE


Anne Pariser
National Institutes of Health


Christine Patch
Genomics England


Alberto Pereira
ENDO ERN


Vinciane Pirard
EFPIA-EuropaBio


Ana Rath
Orphanet


Andrea Ricci
ISSINOVA


Jayne Spink
Rare Diseases UK


Birute Tumiene
Vilnius University Hospital Santaros Clinics

Outreach-Ausschuss

Simona Bellagambi
Rare Diseases Italy (UNIAMO)

Danas Ceilitka
Association for Children Rare Diseases

Carolina Cobos
FEDER

Helga Gruden
EINSTÖK BÖRN

Jurrat Hasan
Genetic Alliance UK

Lene Jensen
Rare Diseases Denmark (Sjaeldne Diagnoser)

Mirjam Mann
ACHSE

Martina Michalova
Rare diseases Czech Republic

 

Cor Oosterwijk
VSOP

Jean Philippe Placon
Alliance Maladies Rares

Ingeborg Vea
Norwegian Rare Disease National Alliances (FFO)

Miroslaw Zielinski
ORPHAN

Baiba Ziemele
Latvian Alliance for Rare Diseases

Organisiert von:

Mitorganisiert von:

 

Mit Unterstützung von

AFM logo

EU funding logo