“Rare on Air Stories” in white text over blue, purple, and green painted streaks, with a microphone icon and the text: “Léon, Episode 6.”

🎙️ The countdown to #RareDiseaseDay continues — and #RareOnAir Stories is back!

💜 In this episode, we meet Hong-Ahh, whose son Léon lives with #LAMA2 congenital muscular dystrophy — a story of parental love and hope against the odds.

🎧 Listen now: https://www.eurordis.org/rare-on-air/

“Rare on Air, Episode 5 featuring Jessa in a brown cardigan, with a colourful purple and blue painted gradient background and the date 15 January.”

🎙️ As #RareDiseaseDay 2026 nears, #RareOnAir Stories continues!

💜 In this episode, we meet Jessa, an 18-year-old living with #EDS, #MCTD & juvenile arthritis, proving resilience and hope can redefine what’s possible.

🎧 Listen now: https://www.eurordis.org/rare-on-air/

🎙️ New #RareOnAir episode!

How can families drive research for ultra-rare diseases?
Malgorzata Kosla shares how patient leadership is accelerating progress for PACS2.

🎧 Listen: https://go.eurordis.org/rare-on-air-podcast