PWS Awareness Month: 2026

This year we’re inviting everyone to  get involved on 15th May to spread awareness of Prader-Willi Syndrome and raise vital funds for support and research for PWS.



PWS Awareness Day will be celebrated on 15th May this year.  This reflects that PWS is caused by a genetic abnormality involving chromosome 15 and means it falls in UK term time for most schools and colleges.

Schools
Families & Supporters
Workplaces
Residential & Supported Living

Schools:

We’re asking schools to ‘Go orange for PWS’,  inviting pupils to wear something orange, instead of their uniform and donate £1 to PWS Stronger Together.

We have created ‘Go orange’ packs of resources for schools, so the day can also be a learning opportunity for pupils, helping them understand the condition and how they can help to support people with PWS.

Schools:  Please register your interest here to find out more and download everything you need to make the day a success.

Families and Supporters:

Show your support by going orange, taking part in a movement challenge, or getting creative!

Download our PWS Awareness Day inspiration sheet for lots more ideas about how you can fundraise in a way that works for you and your family.

Workplaces:

This year we're encouraging everyone who has a loved one with Prader-Willi syndrome to raise awareness of PWS at their workplace.

Get your workplace involved by taking part in a team fitness challenge, 'going orange' on 15th May, making a pact to take the stairs, or even  donating your daily coffee money!

Help educate your work colleagues about PWS and why you are raising money by displaying posters, making a PWS fact board or adding a footer to your email.

PWS Residential Settings and Supported Living:

We'd love to see PWS providers getting involved by raising awareness,  going orange, or hosting an event or fundraising challenge on May 15th

You could spread awareness and get creative at the same time by designing posters, decorating windows or creating an PWS awareness wall.

Alternatively you could get everyone moving with a team activity challenge...

PWS Awareness Month Highlights

PWS Awareness Month has been a powerful reminder of what our community can achieve together through the PWS Stronger Together Partnership. In 2025, supporters took part in Move It May, logging thousands of active minutes to raise awareness of Prader-Willi Syndrome, while 18 iconic UK landmarks lit up orange for the Glow Orange campaign and social media turned into a sea of orange with support from individuals, schools, and communities. The campaign also gained national media coverage and helped raise awareness with key decision-makers at a House of Lords event, alongside positive news that Soleno Therapeutics has submitted DCCR to the European Medicines Agency for review. In 2024, our first awareness month together saw the community virtually travel 2,500 kilometres and record over 59,000 Move It May minutes, while 39 national landmarks lit up orange and the campaign received widespread media coverage, helping us shine a light on PWS across the UK.

Looking Ahead

At PWS Stronger Together, we believe every May is a chance to amplify our community’s voices, educate the wider public and stand united for change. Thank you to every family, professional, donor and friend who supported us these last two years.

We will continue to keep working to ensure everyone with PWS gets the understanding and support they deserve.