Pre and Post-Conference Events

In anticipation of the 2024 ECRD conference, an exciting series of podcasts, thought leader sessions, and satellite meetings will be offered to spark your curiosity and deepen your understanding of the critical topics that will be explored during the conference. These events are your gateway to unparalleled insights and the opportunity to engage with leading minds in the field.

Stay tuned for more information on how you can be a part of these events leading up to the ECRD 2024 on 15-16 May 2024. Prepare to be inspired, informed, and involved – the journey to ECRD is about to get even more exciting!

In the meantime, remember to register for the conference HERE.

Podcasts

Prior to this year’s conference, we will be releasing a number of podcast episodes linked to the themes of some of the parallel sessions taking place. These podcasts will provide an opportunity for listeners to take a deep-dive into the session content and familiarise themselves with key topics before ECRD 2024 begins.

Once the episodes are made available, you’ll be able to listen to them here.

 

Thought Leader Session: Harnessing Digital Solutions for Rare Diseases

Thursday, 25th April 2024, at 12.00 - 13.15 CET

Platform: This Thought Leader Session will take place on Zoom and is open to anyone, free of charge. Register to participate here. Please note, conference registrants are not automatically registered to attend Thought Leader Sessions.

Description

This workshop aims to facilitate knowledge exchange, foster collaboration, and inspire action towards leveraging digital solutions for the benefit of individuals living with rare diseases.

Learning Objectives

  • Increased Awareness: Participants will be able to describe the unique challenges faced by individuals with rare diseases and explain the potential of digital solutions to address them.
  • Demonstrated Innovation: Attendees are introduced to innovative digital tools and technologies designed for rare diseases, being able to describe the ways in which diverse approaches can improve patient outcomes and healthcare delivery.
  • Strengthened Advocacy Efforts: Participants are able to explain the value and necessity for policies, funding, and research initiatives that support the advancement of digital healthcare solutions for rare diseases.

Thought Leader Session: Collaborating for Change - Transforming Rare Disease Outcomes through Public-Private Partnerships

Friday, 3rd May 2024, at 15.00 - 16.00 CET

Session Programme Coming Soon!

Platform: This Thought Leader Session will take place on Zoom and is open to anyone, free of charge. Register to participate here. Please note, conference registrants are not automatically registered to attend Thought Leader Sessions.

Description

Rare Diseases pose unique challenges that require collaborative efforts from diverse stakeholders including patients, researchers, clinicians, industry partners, and policymakers. 

This session will delve into the dynamics of such collaborations, particularly focusing on Public-Private Partnerships (PPPs), as an essential avenue for driving innovation, research, and improved outcomes for individuals affected by rare diseases.

This session co-powered by Together4RD and the Rare Disease Moonshot aims to present best practice examples, opportunities, needs and difficulties of PPPs in Europe and beyond. 

Learning objectives

  • Participants will be able to explain the importance of PPPs in improving research in Rare Diseases
  • Participants will be exposed to the challenges and opportunities in engaging in PPPs in Rare Diseases
  • Participants will be provided with resources and opportunities to enhance the competitiveness of Europe with more PPPs

Thought Leader Session: The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease

Tuesday 7th May 2024, at 14.00 - 15.00 CET

Platform: This Thought Leader Session will take place on Zoom and is open to anyone, free of charge. Register to participate here. Please note, conference registrants are not automatically registered to attend Thought Leader Sessions.

Description

Since 2018, the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease – a multidisciplinary group of rare disease advocates, researchers, physicians, and technologists – has been working towards its vision of a clear path to a timely, accurate rare disease diagnosis for all children. We are excited to share the Global Commission’s renewed efforts and progress to date.

In this session, Global Commission members and co-chairs will share their newly developed global framework to help guide countries in strengthening their diagnostic efforts. This framework will include a resource compendium with case studies of successful initiatives that have made strides to shorten the time to rare disease diagnosis, highlighting learnings for other countries to draw on. The Global Commission is excited to release these materials at the webinar and will call for others in the rare disease community to submit successful examples that we can include in this framework.

Learning Objectives

  • Summarize the value of the Global Commission and its commitment to end the diagnostic odyssey for children living with a rare disease.
  • Share examples of successful initiatives working to reduce the time to rare disease diagnosis.
  • Explain remaining gaps in the rare disease community and how the Global Commission’s work factors in.

Satellite Meeting: The Romanian National Alliance for Rare Diseases - RONARD

Monday, 13th May 2024, at 15.00-17.00 CET

Platform: More info coming soon

Description & Learning Objectives:

  • Exchange the views of different stakeholders on the links between national and EU policy framework for rare diseases.
  • Raise awareness of the collaborative efforts needed to create clear policy recommendations on a national and EU level.

Organised by:

Co-organised by:

 

With the support of

AFM logo

EU funding logo