Rare Disease Day – Understanding Genetic, Rare, and Undiagnosed Conditions
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Rare Disease Day – Understanding Genetic, Rare, and Undiagnosed Conditions
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Podcast Episode: Rare Disease Day – Understanding Genetic, Rare, and Undiagnosed Conditions
Liner Notes
In this special episode of Voices of One Fylde, hosts Rebecca Carter-Lindsay and Marilyn Booth explore the significance of Rare Disease Day, observed every year on 28th February. The episode shines a light on the challenges faced by individuals living with genetic, rare, and undiagnosed conditions, as well as the impact on learning disabilities and development.
What’s Covered?
- An introduction to genetic, rare, and undiagnosed conditions.
- The impact on learning disabilities, including conditions like Fragile X syndrome and Cri du chat syndrome.
- The challenges families face, from diagnosis difficulties to lack of specialist healthcare.
- The importance of awareness and advocacy, and what needs to change for better support.
Why Listen?
- Gain insight into why rare diseases matter and how they affect people’s daily lives.
- Learn about organisations like SWAN UK, Genetic Alliance UK, and Rare Disease UK and the work they do.
- Discover how you can help by raising awareness and supporting individuals with rare conditions.
Listen Now
📻 Tune in live on One Fylde Radio: onefylderadio.co.uk
🎧 Download or stream anytime: [Insert Podcast Link]
🌍 Learn more about Rare Disease Day: Rare Disease Day Official Website
Join the Conversation
Use #RareDiseaseDay #OneFylde #VoicesOfOneFylde on social media to share your thoughts and support the cause!