W3.CSS
   

The primary policy objective of ECRD 2024 is to ensure that rare diseases remain a top priority for the upcoming European political leadership, as the Conference sets a decisive platform to champion the integration of a comprehensive European Action Plan on rare diseases into the new EU legislative agenda, rooted in the recommendations of Rare 2030. Spanning a range of areas including early diagnosis, accessibility and affordability of treatments, social inclusion, research and innovation, national strategies and access to highly specialised care, such an Action Plan would encompass all policies and initiatives impacting people living with a rare disease at both European and national levels, establishing clear, measurable goals to be achieved by 2030.

“If we were capable to do what we did for cancers, we can do it for rare diseases.”
European Commissioner for Health, Stella Kyriakides.


ECRD is a great opportunity to translate the current political momentum into comprehensive actions for the EU’s next cohort of policymakers and leaders. The ECRD 2024 programme will do this by addressing the key policy areas that form part of a broader policy framework. The conference will culminate in the output of a co-created, open letter to the EU Institutions and country leaders where expectations of the community are clearly spelled out and conveyed to decision-makers in an unequivocal manner, leaving a solid legacy for the future EU leadership. You have the opportunity to be part of this significant moment!

For the first time in its history, ECRD will take place as a fully hybrid conference, taking place on 15 & 16 May 2024 online and at The Square in Brussels. Conceived as an inclusive conference, the event offers live captioning for each session in the following languages: English, Spanish, Italian, French, German, Greek, Czech, Danish, Dutch, Polish, Hungarian, Romanian and Portuguese. This hybrid format is set to build on the success of the previous online conference, to expand outreach to key stakeholders, showcase strong political support and build momentum for the post-ECRD 2024 implementation. This approach is a direct response to the feedback from our community and emphasises our commitment to making the conference more accessible and engaging for all. Click on the interactive boxes below to learn more about the programme.

WEDNESDAY, 15 MAY 2024

08.45 - 09.30

ARRIVE EARLY

09.30 - 11.00

Dive into ECRD - Europe’slargest, patient-led, rare disease policy-shaping event!

click here to read more
11.00 - 11.30

Comfort break

11.30 - 12.30

Learn and pitch your ideas in the Poster Pitch

click here to read more
12.30 - 14.00

Lunchtime!

Join the poster scavenger hunt and organise your own informal side-meetings!

PARALLEL SESSIONS

14.00 - 15.30
Choose one of the following parallel sessions

Revolutionising Funding Strategies for Breakthrough Therapies in Rarer Diseases

click here to read more

No Health without Mental Health!
Let’s Co-create a Mental Health and Wellbeing Toolkit

click here to read more
15.30 - 16.10

Another break for serious fun!

16.10 - 17.15

Join table discussions

click here to read more
17.15 - 18.00

Time for the daily news round up!

click here to read more
18.00 - 19.30

BELGIAN-THEMED WELCOME RECEPTION

(in person only)

THURSDAY, 16 MAY 2024

08.30 - 09.00

Check-in

09.00 - 09.45

BE INSPIRED BY OUR SURPRISE KEYNOTE SPEAKER!

click here to read more
09.45 - 10.45

Poster Awards and Poster Pitch

click here to read more
11.00 - 11.30

Comfort break

PARALLEL SESSIONS

11.30 - 13.00
Choose one of the following parallel sessions

The Path Forward for Equitable Diagnosis

click here to read more

Achieving Full Reach: Overcoming the Last Challenges to Access Highly Specialised Care

click here to read more
13.30 - 14.00

Lunchtime!

PARALLEL SESSIONS

14.00 - 15.30
Choose one of the following parallel sessions

Innovative Therapies, Unequal Access: Bridging the Gap for Rare Disease Treatments

click here to read more

National Plans: Exchanging Best Practices to Forge a Unified European Response to Rare Disease

click here to read more
15.30 - 16.15

Comfort break

16.15 - 16.45

Stay in the loop with the daily news round up

click here to read more
16.45 - 17.30

Don’t miss the closing! MOVING FROM TALK TO TAKING ACTION!

click here to read more

Programme Committee Co-chairs


Ruxandra Draghia Akli
The Janssen Pharmaceutical Companies of Johnson and Johnson


Milan Macek
Charles University Prague


Ana Rath
Orphanet

Programme Committee Members


Gabriella Almberg
UCB


Simona Bellagambi
UNIAMO


Matt Bolz-Johnson
EURORDIS


Simone Boselli
EURORDIS


Valentina Bottarelli
EURORDIS


Jo de Cock
Advisor to WHO Europe and OECD


Toon Digneffe
Takeda


Roseline Favresse
EURORDIS


Holm Graessner
University Hospital Tübingen


Ines Hernando
EURORDIS


Kirsten Johnson
Fragile X International


Zoi Kolitsi
I~HD Institute of Innovation through Health Data


Anne-Sophie Lapointe
French Ministry of Health and Solidarity


Yann Le Cam
EURORDIS


Adéla Odrihocká
Rare Diseases Czech Republic


Francesc Palau
Hospital Sant Joan de Diu


Francesca Pasinelli
Fondazione Telethon


Ana Rath
Orphanet


Claas Roehl
NF Patients United


Eva Schoeters
RaDiOrg – Rare Diseases Belgium


Ariane Weinman
EURORDIS


Stefan Živković
National Organization for Rare Diseases of Serbia

Outreach Committee Members


Simona Bellagambi
UNIAMO


Birthe Byskov
Rare Diseases Denmark


Shun Emoto
ASrid

Mirjam Mann
Allianz Chronischer Seltener Erkrankungen


Vicky McGrath
Rare Diseases Ireland


Ramaiah Muthyala
Indian Organization for Rare Diseases

Paulo Gonçalves
RD_Portugal

Ulrike Holzer
Pro Rare Austria


Charalampos Papadopoulos
Cyprus Alliance For Rare Disorders

Organised by:

Co-organised by:

 

With the support of

AFM logo

EU funding logo