Rare on Air
By EURORDIS
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Category: Health & Fitness
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Subscribers: 2
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Episodes: 65
Description
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.
| Episode | Date |
|---|---|
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Rare Disease Day: Stephanie's story
|
Feb 26, 2026 |
|
Rare Disease Day: Ren's story
|
Feb 19, 2026 |
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Rare Disease Day: Loago's story
|
Feb 12, 2026 |
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Rare Disease Day: Léon's story
|
Feb 02, 2026 |
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Rare Disease Day: Jessa's story
|
Jan 15, 2026 |
|
Rare Disease Day: Ken's story
|
Jan 08, 2026 |
|
Małgorzata Kosla on turning a PACS2 diagnosis into global research and action
|
Dec 29, 2025 |
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Rare Disease Day: Christine's story
|
Dec 18, 2025 |
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Rare Disease Day: Annarita's story
|
Dec 04, 2025 |
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Rare Disease Day: Ahmed's story
|
Nov 20, 2025 |
|
ERNs on Air: Practical tools for patient partnership in the ERNs
|
Nov 07, 2025 |
|
Inês Alves on the power of lived experience in shaping rare disease policy
|
Oct 31, 2025 |
|
ERNs on Air: Tackling medicine shortages for rare endocrine conditions
|
Sep 25, 2025 |
|
Tomasz Grybek on patient involvement and making lived experience count in regulatory decisions
|
Jul 03, 2025 |
|
Nick Sireau on patient-driven scientific breakthroughs and drug repurposing
|
Apr 01, 2025 |
|
Rare Disease Day: Noah's story
|
Feb 26, 2025 |
|
Rare Disease Day: Eden's story
|
Feb 19, 2025 |
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Rare Disease Day: Huy's story
|
Feb 12, 2025 |
|
Rare Disease Day: Sushmita's story
|
Feb 06, 2025 |
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Rare Disease Day: Sophia's story
|
Jan 29, 2025 |
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Rare Disease Day: Khim's story
|
Jan 15, 2025 |
|
Rare Disease Day: Fatimah's story
|
Jan 02, 2025 |
|
Julián Isla on how AI can revolutionise rare disease healthcare
|
Dec 19, 2024 |
|
Rare Disease Day: Emma and Nellie's story
|
Dec 18, 2024 |
|
Rare Disease Day: David's story
|
Dec 06, 2024 |
|
ERNs on Air: JARDIN - The Joint Action integrating ERNs into national health systems
|
Dec 05, 2024 |
|
Kelly du Plessis on fighting for her son and rare disease advocacy in South Africa
|
Nov 28, 2024 |
|
Rare Disease Day: Dani's story
|
Nov 20, 2024 |
|
Miriam Wilms on navigating rare disease healthcare as both a mother and a specialist surgeon
|
Oct 31, 2024 |
|
Zainab Alani on diagnostic delays, intersectionality, and educational gaps in rare disease medicine
|
Sep 26, 2024 |
|
ERNs on Air: Putting Patient Journeys into Action
|
Sep 12, 2024 |
|
Young advocate Jane Velkovski on accessibility and making a difference through football
|
Jul 25, 2024 |
|
Marina Zapparoli Manzoni on the power of finding and building a community
|
Jun 27, 2024 |
|
ERNs on Air: Simplifying access to cross-border healthcare - a Czech proposal
|
Jun 12, 2024 |
|
Ayça Şahin's story and what our survey reveals about long diagnostic journeys
|
May 30, 2024 |
|
Positively styling life with lymphedema: Nicole Faccio
|
Apr 30, 2024 |
|
The impact of an ultra-rare condition: Fatal Familial Insomnia
|
Mar 28, 2024 |
|
ERNs on Air: EURACAN Registry - Developing a long-term vision together
|
Mar 12, 2024 |
|
Rare Disease Day: Leif's story
|
Feb 29, 2024 |
|
It's Rare Disease Day 2024!
|
Feb 29, 2024 |
|
Rare Disease Day: Natalia's story
|
Feb 22, 2024 |
|
Rare Disease Day: Jay's story
|
Feb 15, 2024 |
|
Rare Disease Day: Katie's story
|
Feb 08, 2024 |
|
Rare Disease Day: Dan's story
|
Feb 01, 2024 |
|
Mental wellbeing: Hands-on support for the community
|
Jan 31, 2024 |
|
Rare Disease Day: Deeann's story
|
Jan 25, 2024 |
|
Rare Disease Day: Bor's story
|
Jan 18, 2024 |
|
Rare Disease Day: Becky's story
|
Jan 11, 2024 |
|
Rare Disease Day: Amber's story
|
Jan 05, 2024 |
|
Gene therapies: Promoting development and expanding access
|
Dec 28, 2023 |
|
Action within reach: Shaping the future at ECRD 2024
|
Nov 30, 2023 |
|
ERNs on Air: Giving back to the community
|
Nov 08, 2023 |
|
Gene therapies: Why are they important?
|
Oct 27, 2023 |
|
Should more diseases be screened for at birth?
|
Sep 28, 2023 |
|
ERNs on Air: No two are alike
|
Sep 07, 2023 |
|
Assessing the true value of new health technologies
|
Aug 31, 2023 |
|
Finding New Uses for Existing Medicines
|
Jul 27, 2023 |
|
Transforming Healthcare through Sharing Data
|
Jun 29, 2023 |
|
The effort to make rare disease medicines less rare
|
May 26, 2023 |
|
Mental wellbeing with a rare disease
|
Apr 27, 2023 |
|
ERNs on Air: The role of patient advocates
|
Apr 18, 2023 |
|
War with a rare disease: Responding to the invasion of Ukraine
|
Feb 28, 2023 |
|
Breaking down barriers: Living with a rare disease and disability
|
Jan 31, 2023 |
|
Screening at birth: The key to longer, healthier and better lives
|
Dec 21, 2022 |
|
The Journey of European Reference Networks
|
Nov 29, 2022 |