Prader-Willi Syndrome Association UK

30/10/2026

Halloween can be a tricky time when you have PWS, with sweets and chocolate everywhere you turn.

Check out these ideas from our community to make Halloween feel a little less of a nightmare...

1: Enlist your neighbours
If your child really wants to go trick or treating, try visiting a few neighbours you know in advance and leaving either non-food treats or healthy snacks with them, ready for when you come by later!

2: The Teal Pumpkin
The Teal Pumpkin is a concept that is becoming increasingly recognised. It lets people know that you offer options for those with dietary requirements or food allergies. Look out for a Teal Pumpkin displayed at participating households, and carry a Teal Pumpkin bag or basket to show that you are taking part in non-food treats.

3: Let them do the giving
Some children with PWS enjoy staying in and taking charge of giving out sweets to visiting trick-or-treaters (under close supervision, of course!).

This way, they get to see friends and neighbours, feel involved, and can be rewarded with a suitable treat afterwards.

4: The Switch Witch
The 'Switch Witch' asks children to leave any unsuitable treats out at bedtime. Then, while they are sleeping, the witch takes the treats away and leaves something special they would like in their place!

How do you manage Halloween?

28/10/2026

Our 2027 Community Weekends are now open for bookings!

We’re excited to be visiting five locations across the UK in 2027, helping us reach more of our PWS community and bring families together for a chance to connect, share experiences and enjoy time together.

Here’s where we’ll be heading:

Trecco Bay, South Wales
16 to 19 April 2027

Tattershall Lakes, Lincolnshire
14 to 17 May 2027

Sundrum, Scotland
11 to 14 June 2027

St Margaret’s Bay, Kent
2 to 5 July 2027

White Cross Bay, Windermere
17 to 20 September 2027

Whether you’re joining us for the first time or returning for another weekend, we’d love to see you there!

Visit our website to register your interest and receive more information: https://bit.ly/PWSAUKEvents

27/10/2026

Congratulations to Darren who has been nominated for Care Worker of the Year!

Many congratulations to Darren who is one of our members of staff who has been nominated for Care Worker of the year, we find out the result on the evening of 19th November, we will of course let you know how he gets on 🤞🎉

25/10/2026

Have you visited the PWSA UK online shop?

We have a range of merchandise available, including wristbands, hoodies, T-shirts, tote bags, keyrings, teddies and much more!

Our pin badges are now back in stock, so why not take a look?

Shipping is now calculated at checkout, helping to make our merchandise better value for our supporters.

Every purchase helps support PWSA UK and the work we do to support people living with PWS and their families, while helping to raise awareness.

It’s a lovely way to support our charity and treat yourself to something special at the same time!

Visit our online shop:https://bit.ly/pwsauk-shop

20/10/2026

Please help us to carry on supporting people with PWS:

Did you know we receive no government funding?

All the services we provide are funded entirely by donations, and we urgently need more funds to help us continue to help people with PWS.

If you can afford it, please could you consider making a regular donation? Even really small amounts make a huge difference:

£5 a month could help keep our helpline open, providing advice and reassurance when families need it.

£10 a month could help a family access the right educational support for their child, with support filing in forms,

£20 a month could help us support a family following a new diagnosis.

£50 a month could help us stand alongside a person with PWS during a crisis.

Every donation helps us continue our work and be there for our PWS community.

If you would like to support our work, you can make a one off donation or set up a regular monthly donation here: https://bit.ly/PWSAUKdonate

To everyone who already supports PWSA UK, thank you. We are so grateful for your kindness.

16/10/2026

Transition to adulthood can be a worrying time for parents and carers of young people with PWS, dealing with lots of changes in support across health, education, social care and their finances.

Whether you’re just starting to think about what happens when your child turns 18, or already in the trenches filling in PIP forms, our webinar will cover everything you need to ensure a successful transition from child to adult services.

The session will be hosted by experts from Family Fund, with PWS specialist advisers from our team on hand to give you specific advice about how to manage the additional complications PWS may bring around food, money and mental capacity.

Register here:https://bit.ly/PWSAUKEvents

14/10/2026

Free resources from PWSA UK

Did you know we have a range of free resources available to download or order from our website? They are designed to support people living with PWS, their families and the professionals who support them.

Here are three of our helpful resources.

Practical Portions for PWS

Created by expert PWS dietitians and nutritionists, this resource helps make it easier to work out appropriate portion sizes to meet nutritional needs while maintaining a healthy weight.

See Me, Not Just Prader Willi Syndrome

This booklet can be shared by people with PWS with their carers, supporters and service providers to help them better understand their individual needs. It includes practical guidance on providing support, with space to personalise the booklet together.

Medical Alert Cards

These handy, wallet sized cards help inform medical staff, particularly in emergencies, about the specific health issues and risks associated with PWS.

All three resources are available for free from our website.

Find out more and get yours here: https://bit.ly/pws-resources

12/10/2026

Join us in Belfast for our Northern Ireland Christmas Get Together! 🎄

We’ll be heading to Belfast on 28 November for the first of our Christmas Get Togethers.

Flourish will be joining us to lead some festive activities and help us get into the Christmas spirit.

Register your interest here:https://bit.ly/PWSAUKEvents

09/10/2026

Our Christmas cards are now available to order from our online shop!

Choose from our two lovely designs, ‘So Dear to Me’ and ‘A Winter’s Stroll’. Each pack contains 10 cards, with the message ‘With best wishes for Christmas and the New Year’ printed inside.

By purchasing your Christmas cards from PWSA UK, you’ll be supporting our work and helping to raise awareness of PWS.

There are just 200 packs available, so order yours today!

The price includes postage and packaging within the UK.

Shop here: https://bit.ly/47fQkcP

08/10/2026

Planning for the future of a loved one living with PWS can feel overwhelming, but having the right information can make planning with confidence a little easier.

We’re resharing this helpful upcoming webinar from PWSA UK, where Phil Ogden will explore the legal and financial options available to families, including:

• Deputies and Deputyships
• Lasting Powers of Attorney
• Wills
• Trusts and Discretionary Trusts
• Savings and financial planning considerations

There will also be an opportunity to find out about further support and guidance following the session.

19th October
7:30pm

Please note: This webinar covers the legal framework for England and Wales only.

Register your interest: https://bit.ly/PWSAUKEvents