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Rare Disease Day – Understanding Genetic, Rare, and Undiagnosed Conditions artwork
Voices of One Fylde

Rare Disease Day – Understanding Genetic, Rare, and Undiagnosed Conditions

  • S1E20
  • 07:00
  • February 21st 2025

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!



Voices of One Fylde

Welcome to Voices of One Fylde, a compelling podcast series produced by the One Fylde community. This podcast offers a platform for open dialogue, personal stories, and insightful discussions centred around the One Fylde charity and the unique experiences of individuals with learning disabilities and autism.

What to Expect:

  1. Community Stories: Hear heartfelt stories and personal experiences from members of the One Fylde community. These narratives provide a window into the daily lives, challenges, and triumphs of individuals with learning disabilities and autism.
  2. Charity Insights: Gain a behind-the-scenes look at the One Fylde charity. Learn about its impactful initiatives, ongoing projects, and the positive changes it brings to the community. Interviews with staff, volunteers, and beneficiaries offer a comprehensive view of the charity's work and mission.
  3. Issues and Advocacy: Engage with discussions on critical issues facing the learning disability and autism communities. Topics include accessibility, inclusion, personal rights, and advocacy efforts. These episodes aim to raise awareness, promote understanding, and encourage positive action.
  4. Expert Interviews: Listen to interviews with experts, advocates, and community members who provide valuable insights, advice, and inspiration. These conversations delve into a wide range of topics, offering depth and perspective on issues that matter.
  5. Resources and Support: Discover information on available resources, support networks, and services tailored to the needs of the learning disability and autism communities. Our practical advice and tips help listeners navigate their own journeys and find the assistance they need.
  6. Engaging Content: Enjoy a blend of engaging and informative content. From heartfelt stories to lively discussions, Voices of One Fylde delivers episodes that are both entertaining and educational.

Join us on Voices of One Fylde to connect with a vibrant community, explore important issues, and celebrate the diverse voices that make up the One Fylde family. Tune in to be informed, inspired, and uplifted by the remarkable stories and insights shared on our podcast.