PIP-UK Poland Syndrome Charity

Carol and Paddy's Sky Dive

Fundraising for PIP-UK Poland Syndrome Charity
£550
raised of £500 target
Carols Sky Dive for Poland Syndrome Awareness Day, 30 April 2023
We empower & support people with Poland Syndrome to live well providing 121 support, advocacy, wellbeing programmes, early diagnosis help, peer support, ways to connect. We need your help to continue this work and continue to change lives.

Story

In 2022 we launched our Global Poland Syndrome Community Register. We have made a start with the launch and getting over 100 people engaged, but now we need your help. Our global patient community, mainly children and young adults, is geographically dispersed, knowledge is limited and researchers have few resources to study the condition. Registers are a powerful aid to understanding the nature, variations and natural history of a disease. A registry needs to be sustainable and successful over the long term for the best chance of having a real influence on research. There are currently no specific funding streams for rare disease registers. At PIP-UK, we are working hard to support people with 121 advice, advocacy, NHS referrals, appeals & connecting the community via our events & groups. We are lucky to have secured several key grants over the last couple of years. But the reality is, to maintain our current trajectory to make forever change for Poland Syndrome, we need your help!

Share this story

Help PIP-UK Poland Syndrome Charity

Sharing this page with your friends could help raise up to 3x more in donations

You can also help by sharing this link on

About the campaign

We empower & support people with Poland Syndrome to live well providing 121 support, advocacy, wellbeing programmes, early diagnosis help, peer support, ways to connect. We need your help to continue this work and continue to change lives.

About the charity

PIP-UK Poland Syndrome Charity

Verified by JustGiving

RCN 1188941
We are the only charity in the UK that provides invaluable support to anyone affected by Poland Syndrome, a rare limb difference. Poland syndrome is a condition where a child is born with missing or underdeveloped chest muscles, and can affect the ribs, shoulder, arm, internal organs & hand.

Donation summary

Total raised
£550.00
+ £36.25 Gift Aid
Online donations
£400.00
Offline donations
£150.00

* Charities pay a small fee for our service. Find out how much it is and what we do for it.