Andras Kulja: World Rare Disease Day, let’s turn awareness into action!
Andras Kulja, Member of the European Parliament, shared a post on LinkedIn:
“Today on World Rare Disease Day, let’s turn awareness into action!
Earlier this month, I had the honor of co-hosting an Expert Briefing Session on Rare Diseases in the European Parliament alongside my colleague Billy Kelleher. We brought together patient advocates, clinicians, and industry experts to discuss concrete policy actions that can transform the lives of the 30+ million Europeans living with rare diseases.
Key takeaways from our discussion:
- The urgent need for a European Action Plan on Rare Diseases
- Harmonized newborn screening across EU member states
- A more streamlined clinical trial environment for rare disease treatments
- Strengthening cross-border healthcare access to ensure no patient is left behind
A big thank you to our expert speakers for their invaluable insights:
- Dimitrios Athanasiou, Board Member, World Duchenne Organization (WDO)
- Martine Pergent, President, International Patient Organization for Primary Immunodeficiencies (IPOPI)
- Prof. Geert Mortier, Head of Center for Human Genetics, UZ Leuven
- Rachel Finnegan, Senior Director, Government Affairs, BioMarin
- Victor Maertens, Government Affairs Director, EUCOPE
A special thanks to BioMarin and EUCOPE for their support in making this discussion possible.
We have a common responsibility towards rare disease patients. We must work towards a future where diagnosis is faster, treatments are accessible, and innovation thrives.”
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