Rare Disease Day: Dani's story

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Rare on Air

EURORDIS

54 episodes

3 days ago

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.

Health & Fitness

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Health & Fitness

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Rare Disease Day: Dani's story

Rare on Air

5 minutes 5 seconds

11 months ago

Rare Disease Day: Dani's story

This episode of our bonus series marking Rare Disease Day features Dani who lives with progressive fibrodysplasia ossificans (PFO). You will hear about her journey from the moment she was born to when she was 16 years old and found a lump on her back. Dani explores the problem of misdiagnosis and her journey with FOP.

Join Dani as she tells a story of frustration, overwhelming change and finally acceptance. Her story is a symbol of resilience as she shows that no obstacle is impossible to overcome with support and love from each other.

Visit ⁠⁠⁠rarediseaseday.org⁠⁠⁠ to share your story or get involved. Rare Disease Day is on 28 February 2025.