Rare Disease Europe AGM
- tobiasarndt
- May 15, 2025
- 1 min read
Avril Daly presented the impressive activity report of Rare Disease International - more than 700 events - Rare Barometer - Advocating and much more - www.eurordis.org
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I just read this post about the Rare Disease Europe AGM and honestly it was really impactful it’s encouraging to see patient groups, advocates, and experts coming together to share progress, challenges, and real‑world experiences in a way that feels collaborative instead of just informative. I liked how the article didn’t just list event details but highlighted the voices and priorities of people living with rare conditions, because that perspective often gets lost in broader health discussions. Reading this made me think about how important it is for organisations and communities to keep pushing for visibility, research, and policy change, and how events like this help build momentum instead of isolated efforts. Writing about topics like advocacy, health policy, and…