Poland syndrome is a rare birth defect affecting a small number of the population. Many babies born with Poland Syndrome are not diagnosed until later in life. Parents and children can feel isolated and unsupported. We want to prevent that feeling of being alone. So we’re working with some charities to investigate the potential of a new campaign.
PIP-UK has teamed up with EDRIC and DysNet to do some research for an upcoming campaign. We are looking for our readers who are parents of a child born with limb difference to participate. There’s a short survey to complete which should take less than 5 minutes. You can complete this by going to fluidsurveys.com/surveys/dysnet/what-if/
This is the start of the research and the campaign. If we continue we will be launching a European campaign to show the world that being born with a limb difference doesn’t mean can’t just means different! There will be a video put together of which you can participate (more on that soon) and it will be full of uplifting stories to inspire.
At PIP-UK we’ve brought you stories from across the globe telling you all about how people with limb differences adapt to their lives. This is your chance to give something back and help us continue to raise awareness. Whilst Poland Syndrome is our main cause, anyone who has a child born with any limb difference can complete the survey and get involved.
We often ask you to comment or share our stories. This time we really need you to. We’re hoping to get as many responses as possible. If you have any concerns or questions then please email us at firstname.lastname@example.org
[EDIT] We took a pre-limary sample to enable us to provide information to the media. We have now re-opened the survey (21st July 2014) and it will run until further notice. So please continue to share!