Welcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.
For our inaugural guest episode, we’re glad to welcome friend, advocate, and parent Sam Fillingham. Sam is the Founder of Poland Syndrome Support UK. According to their website pip-uk.org, “many children are born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community.“
Sam shares a bit about Poland syndrome, how they got started, and their new patient registry, changing the lives of patients far and wide.
Join the register ➡️ https://pip-uk.org/poland-syndrome-community-register
Learn about the clinic ➡️ https://pip-uk.org/poland-syndrome-clinic
Case study ➡️ https://bit.ly/3EmA3Wb
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