Eurordis 2024 – Brussels

From May 15-16, 2024, Eurordis (the European Organization for Rare Diseases) organized a member conference in Brussels (Belgium). Around 400 participants attended in person and around 400 participants attended online.

The meeting began with a video message from the Belgian Minister Vandenbroucke, in which he mentioned that around 30 million people with rare diseases live in the European Union. He stated that in the European Union, everyone has the same opportunities, including people with rare diseases. The European Union is working hard on the European Data Space, which is intended to facilitate the sharing of medical data between doctors within the European Union (cross-border healthcare).

An important theme during the conference was ‘no health without mental health.’ People seek others who understand what they are going through (recognition and acknowledgement). It appears that images on the Internet cause a lot of anxiety and create a barrier to meeting others.

Cross-border healthcare for access to healthcare (diagnosis and care) in the European Union remains a challenge. The availability of medicines can vary greatly between countries. This is mainly determined by manufacturers who influence prices. Furthermore, there are differences in insurance between countries and, not to mention, the differences in the costs of medical treatments between countries (which are usually based on the cost of living in each country). The influence of the European Reference Networks with doctors is also significantly increasing. In certain cases, it is possible for the doctor to travel rather than the patient.

On the first day, two parallel sessions were organized:

1. Revolutionising Funding Strategies for Breakthrough Therapies in Rarer Diseases.
2. No Health without Mental Health! Let’s Co-create a Mentally Healthy Toolkit.

Lex attended the second session. This was in the form of a panel discussion where the audience could also participate and contribute ideas. After these sessions, smaller groups were formed for further discussion.

As an organization, we received compliments on our informational material from Lucy McKay.

The second day began with the presentation of several posters. After that, two parallel sessions were organized:

1. The Path Forward for Equitable Diagnosis.
2. Achieving Full Reach: Overcoming the Last Challenges to Access Highly Specialised Care.

After lunch, two more parallel sessions were held:

1. Innovative Therapies, Unequal Access: Bridging the Gap for Rare Disease Treatments.
2. National Plans: Exchanging Best Practices to Forge a Unified European Response to Rare Diseases.

Overall, this conference was less valuable than other Eurordis conferences. Eurordis organizes a member conference and a ‘large’ conference every other year. It is expected that a more extensive conference will be organized again in 2025, which will be more interesting for our organization (and our members, etc.).

Eurordis has a new CEO, Dr. Virginie Bros-Facer. She is the successor to Dr. Yann Le Cam. Yann has significantly raised Eurordis’s global profile. He now has a new role within Eurordis titled ‘Global Affairs.’

We wish Virginie great success in her new role!