Thought Leader Sessions

For this year’s ECRD, participants had the opportunity to join 3 innovative Thought Leader Sessions to learn more about Together4RD (Multi-stakeholder initiative to unlock European Reference Networks (ERN) collaboration with industry), Rare Diseases International – Preparing the foundations of a Global Rare Disease Network and the future Rare Diseases Partnership (Horizon Europe)-Ambition, Vision and Mission.



These three sessions were running in parallel on Day 1 of the conference, Monday, 27th June from 17:00 to 18:00 (CET)


       1. Together4RD -Multistakeholder initiative to unlock ERN collaboration with industry, chaired by Sheela Upadhyaya, National Institute For Health And Clinical Excellence

This Thought Leader Session introduced the work of the multi-stakeholder initiative, Together for Rare Diseases, and offer perspectives from ERN coordinators, patient representatives, industry and policymakers involved in the project on the need to support ERN collaboration with industry in areas that will address the 95% unmet medical needs of people living with rare diseases.

The objective of the session was to outline the steps needed to unlock collaboration and make a call to action for support from the conference attendees.


     2. Rare Diseases International – Preparing the foundations of a Global Rare Disease Network, chaired by Matt Bolz-Johnson, EURORDIS

This Thought Leader Session explored how healthcare systems in the WHO European region could connect into a Global Network, building on and scaling up the ERN system, exploiting the digitalisation of healthcare and harnessing the collective knowledge from the existing networks to unify an international expert community.


       3. Rare Diseases (RD) Partnership (Horizon Europe)-Ambition, Vision and Mission, chaired by Daria Julkowska, European Programme on Rare Diseases

During this session, participants learned more on how the Rare Diseases (RD) Partnership is working to improve the health and well-being of 30 million persons living with a rare disease in Europe, by making Europe a world leader in RD research and innovation and delivering concrete health benefits to rare disease patients (through better prevention, diagnosis and treatments).


ECRD 2022 Programme


Find more about the programme of the sessions!

An official event of the 2022 French Presidency of the Council of the EU

 Organised by:

Co-organised by :

With the support of

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EU funding logo