A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: rareonair@eurordis.org.
Rare on Air
Claim This Podcastby EURORDIS
4.9(11 reviews)
65 episodes
Updated Daily
Accepts GuestsHas SponsorsLocation 🇫🇷
47
Podcast Authority
BetaFairBased on show quality, social media presence, reviews, charts, and more
Quality66
Social0
YouTube0
Engagement68
Podcast Overview
A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: rareonair@eurordis.org.
Language
🇺🇲
Publishing Since
11/29/2022
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47
Podcast Authority
BetaFairBased on show quality, social media presence, reviews, charts, and more
Quality66
Social0
YouTube0
Engagement68
7
Excellent Areas
1
Good Performance
11
Growth Opportunities
excellent
Episode Length
17 minutes
Performing excellently!
good
Show Notes Quality
3.0/5
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needs improvement
Publishing Consistency
Every 18 days
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Recent Episodes
February 26, 2026
Rare Disease Day: Stephanie's story
<p>In this episode of Rare on Air, Rhiannon Walls reads the story of Stephanie, whose daughter lives with LIG4 syndrome, a rare genetic condition that took years to identify.</p><p>Stephanie reflects on the confusion and fear of repeated medical emergencies, the long period of misdiagnoses, and the difficult decision to seek specialist care abroad. Through it all, she speaks openly about the realities of being a parent navigating an unpredictable illness, the setbacks, the determination, and the constant search for answers.</p><p>Her story offers an honest look at caregiving in the face of diagnostic uncertainty and the strength that comes from refusing to give up on finding the support her daughter needs.</p>
February 19, 2026
Rare Disease Day: Ren's story
<p>In this episode of Rare on Air, Rhiannon Walls reads the story of Ren, who lives with Congenital Panhypopituitarism, a condition where the pituitary gland fails to produce essential hormones from birth.</p><p>Ren reflects on growing up with a body that couldn’t regulate growth, stress, or metabolism, and the lifelong treatments that shaped her childhood and adulthood. She speaks candidly about the medical emergencies she has faced, the emotional weight of infertility, and the unexpected paths that led her to motherhood.</p><p>Her story offers insight into living with a condition so rare she has never met another woman with it, and why sharing her experience has become a way to create connection, raise awareness, and support others on similarly isolated journeys.</p>
February 12, 2026
Rare Disease Day: Loago's story
<p>In this episode of Rare on Air, Julien Poulain reads the story of Loago, from Botswana, who was diagnosed with Gaucher disease as a teenager.</p><p>Loago reflects on the challenges that followed his diagnosis, from leaving school due to worsening symptoms, to navigating limited access to treatment, to rebuilding his life after personal loss. Over time, with support from Botswana’s rare disease community, he was finally able to access the medication he needed and return to his studies.</p><p>His story offers a clear and honest look at living with a rare metabolic disease in a setting where resources are scarce, and how determination can shape a path forward even in difficult circumstances.</p>
65 total episodes available
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Tomasz Grybek
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Frequently asked questions
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- What is Rare on Air?
- How often does this podcast release new episodes?
This podcast updates daily.
- Where can I listen to this podcast?
This podcast is available on 9 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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