Edition of 18 June 2024

From 15^th-16^th May 2024, over 700 participants attended the 12^th European Conference on Rare Diseases & Orphan Products (ECRD 2024) in Brussels and online. Organised by EURORDIS, co-organised by Orphanet, and held under the auspices of the Belgian Presidency of the EU Council, the ECRD is the largest patient-led rare disease policy-shaping event in Europe. Held once every two years, it is a landmark event which brings together stakeholders from all parts of the rare disease community to network and exchange insights on how best to address the unmet needs of people living with a rare disease in Europe.

ECRD 2024 participants at the opening plenary session (via EURORDIS)

Over the course of the two days, a number of intensive and innovative discussions were held during key sessions. Through expert panellists and audience participation, each of these uncovered important insights on critical issues to the rare disease community. Topics ranged from funding strategies for breakthrough therapies in rarer diseases, to equitable diagnosis, to co-creating a mental health toolkit, and more.

At the opening and closing plenary sessions, attendees also had the chance to hear from a number of impressive speakers active in the rare disease community and the European policy space. On Day 1, Frank Vandenbroucke, Belgium’s Deputy Prime Minister and Minister for Social Affairs and Public Health, spoke about the importance of cross-border cooperation for rare disease advocacy. During the closing session, EU Commissioner for Health and Food Safety Stella Kyriakides also emphasised the EU’s commitment to enhancing patient access to diagnosis, treatment, and care. Other speakers from the European Economic and Social Committee, the Czech Ministry of Health, and organisations such as EURORDIS, Orphanet, and RaDiOrg all spoke about the importance of ECRD and continued advocacy in the rare disease space.

Following these two days of intense discussion and knowledge exchange, the conference culminated with the co-creation of an open letter to the European Commission ahead of the upcoming European elections, ultimately calling once and for all for a European Action Plan for Rare Diseases. This letter was informed by the takeaways from each of the key sessions, and urges the incoming European leaders to address the critical needs of the rare disease community through actionable measures. In particular, the letter calls on the Commission to:

• Maintain health at the forefront of future policies and programmes;
• Develop a comprehensive European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives;
• Immediately address the most pressing needs of the rare disease population by integrating the actions “within reach” that have been collectively identified within the work programmes of the next years.

Ana Rath, Director of Orphanet, signs the ECRD 2024 open letter (via EURORDIS)

By heeding these calls, the Commission will be responding directly to the unmet needs of the rare disease community as identified by its own members, and taking a concrete step towards better health equity for all people living in Europe.

This year’s ECRD also featured an online poster showcase, displaying posters which explored vast, multidisciplinary range of topics. It is still available through the ECRD website. A number of poster abstracts have also been selected for publication in an upcoming supplement of the Orphanet Journal of Rare Diseases. To explore this year’s posters, learn more about the key session discussions, and read the full text of the open letter, follow the links below.