Prader Willi Syndrome

Peer & Patient Review

We are pleased to be working with Prader-Willi Syndrome Association UK to develop a resource to support weight management and a healthy diet by providing visual information on age-appropriate portion sizes for people with Prader-Willi Syndrome (PWS). 

The Target Group (parents/carers of children, young people and adults with PWS) will: 

• Be aware of age-appropriate portion sizes for people with PWS and feel confident in managing and providing a balanced diet.
• Feel reassured that the person with PWS is getting enough nutrients to grow and develop.
• Feel supported in the choices they make regarding portion sizes.
• Be aware of strategies they can apply to reduce stress and support eating out.

With support, the resource may also be used by adults with PWS.

Resource development

The resource is a guide based on energy (for people with PWS, this is a 30% reduction in calories based on the SACN Dietary Reference Values for Energy). It is designed as a tool to raise awareness of age-appropriate portion sizes to improve diet: it is not a prescriptive diet plan.

We welcome comments from peers on the draft resource:

• 240416 PWS Portions DRAFT for review

Feedback will help inform updates, and we are specifically seeking responses on:

• clarity of key messages
• suitability for purpose
• length and amount of details given
• resource title.

Please send all comments and feedback to jenni.henderson@ndr-uk.org by Tuesday 14/05/24.

Following peer review, the project group will consider all responses, make updates and further improvements before moving to a final peer review and patient testing.

If you would like to be kept up to date with this project, participate in and/or support peer reviews and patient testing, please click the 'Get Involved' button below and provide us with your name, email address and where you work/which organisation you represent, and we will add you to the circulation list for all relevant communication.