What is community if you are living with an ultra-rare disease?

In this episode, I introduce you to the Alström Syndrome Family Festival in New College Worcester, where members from all over the Alström community gather to talk about their experiences, make new connections and help each other out.

By talking to families, patients, scientists and health care professionals, I try to understand the power of connection and what it means to be part of a community that knows the difficulties of living with Alström syndrome.

Furthermore, I give you an impression of my experiences at the festival and reflect on my thoughts meeting others with the same condition.

This episode highlights that living with a rare condition can sometimes feel isolating, but being surrounded by people who understand your experiences can create a powerful sense of belonging, friendship and hope.

This episode forms part of Living with Alström: Stories, Challenges and Hope, a podcast series bringing together personal experiences, professional perspectives, research and the voices of the Alström community to raise awareness of this ultra-rare condition.

Learn More & Support

For further information about Alström Syndrome, support services and the work of Alström Syndrome UK: https://www.alstrom.org.uk/

Disclaimer

The views and experiences shared by guests are their own and are intended for awareness and educational purposes. This podcast is not a substitute for professional medical advice. If you have concerns about your health, please consult a qualified healthcare professional.

Music

Music by Scott Buckley, released under CC BY 4.0. www.scottbuckley.com.au