About PIP-UK Poland Syndrome Support
PIP-UK works hard to raise awareness of Poland Syndrome, create a community of people living with the syndrome, a global patient register and specialised paediatric clinics in the UK.
This rare disease day we are raising awareness by working with Rare Disease UK to release a video of David, a member of our community, also known as Mr One Pec on Instagram. An aspiring fitness influencer who was once too shy to take his top off because of Poland Syndrome, will feature in a video launched by Rare Disease UK for Rare Disease Day 2022.
Sam Fillingham, CEO of PIP-UK has arranged for her local town hall in Buxton, Derbyshire in the Peak District to be lit up on Monday 28 February, to join in with the global chain of lights. Sam will be meeting anyone that would like to attend and see the town hall lit up to support Rare Disease Day between 6:00 and 19:30 on Monday at Leubens, Hall Bank Buxton.
Sam says: ‘I am so grateful that my home town council in Buxton supports PIP-UK and Poland Syndrome, as well as more than 7,000 rare conditions in this way. I hope other people in Buxton and beyond, with Poland Syndrome and other rare conditions will feel a little less alone on Monday night, by linking up in this special way to raise awareness for rare conditions.’
Lauren Roberts, Joint Interim Chief Executive of Genetic Alliance UK says: ‘This Rare Disease Day we want to make sure that people with rare conditions feel less alone. By lighting up landmarks we hope that there will be a greater understanding of what it means to be affected by a rare condition and that we can break the isolation.’
Images
