PWS Awareness Month - May

Every May is Prader-Willi syndrome Awareness Month where organisations across the world run campaigns and events to help make more people aware of the realities of life with PWS.

Go Orange for PWS

The most commonly recognised campaign within the month is 'Go Orange for PWS', which always takes place on the last Friday of the month, where people are invited to wear something orange to encourage people to talk about Prader-Willi syndrome. 

If you would like to buy an orange t-shirt to wear on the big day you can order one as pictured below. They're priced at £6 plus P&P. If you'd like to order yours, email

Social Media Campaign

We also have a Facebook Live session running on Thursday 9th May on our official page where we're inviting the general public to join us and take an opportunity to ask anything they'd like to know about Prader-Willi Syndrome. If you know a family member or a friend who might benefit from joining please let them know!

We will be sharing 'One Year On' stories from the three children with Prader-Willi syndrome whose stories we shared this time last year. You will find them across social media. We also have #LittleKnownFactFriday where we share a fact you may not know about Prader-Willi syndrome every Friday of the month.

We're asking people to participate in #OrangePicForPWS where people are invited to send us their most creative orange themed picture to be in with a chance to win a prize. All you need to do is post your photo to Facebook or Instagram using the hashtag #OrangePicForPWS to enter!

Keep an eye on our social media accounts for all of our awareness campaign material. 

How can I get involved?

Schools, offices and other organisations are invited to run their own awareness and fundraising events to help spread the word. If you would like to take part in an event to raise funds and/or awareness you can find a number of resources at the links below. Alternatively, if you would like to speak to us about doing something to support awareness month, you can get in touch at or by giving us a call on 01332 365676


Schools Pack 

Go Orange for PWS - Assembly Presentation - Letter For Parents - Sponsor Form

No Treats For A Week - Assembly Presentation - Letter For Parents - Sponsor Form

Workplace Pack

Go Orange for PWS - Letter For Colleagues - Sponsor Form - Flyer

No Treats For A Week - Letter For Colleagues - Sponsor Form