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For our inaugural episode, we’re glad to welcome friend, advocate, and parent, Sam Fillingham. Sam is the Founder of PIP UK. According to their website pip-uk.org, ”many children 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.”
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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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow Signalise news on @Dazzle4Rare on Facebook, Instagram, Twitter, and Pinterest. You can find host Kimberly on LinkedIn at @kattague.
The Dazzle4Rare event and Signalise podcast amplify the voices of rare disease and associated communities by sharing their stories, new, events, and more. Working together, we have strength in numbers, amplifying our critical messages.
We feature guests and discuss relevant topics for rare disease patients, caregivers, and those in the URCIID community.