Support for you

Parent to Parent Online Groups

Our Parent to Parent groups (P2P) are support groups run by parents for parents. These are a place to share experiences, discuss different topics and speak to other parents.

Please note: P2P groups are currently under review but if you would be interested in attending one in the future, please let us know by entering your details below. 

Tools and resources

PWS Medical Alert Card 

This is a wallet sized card which can be used to quickly inform medical staff, particularly in emergencies, that there are PWS specific health issues and risks which they need to be aware of. Download it here.

Pilates for PWS 

Pilates can be especially beneficial for PWS. We have some videos for specially created for children with PWS. Watch here.

Understanding Prader-Willi Syndrome (PWS): A Guide for Employers UK Wide

This leaflet provides practical guidance for employers supporting individuals withPWS in employment settings across the UK.

With the right adjustments, individuals with PWS can be reliable, consistent, and valued employees. Download here.

Information for medical professionals

Download information for GPs and information for hospital staff to take with you in the event of a medical emergency or unexpected appointment.

Consensus Guidelines:

Best practice management of PWS

‘Prader–Willi Syndrome – guidance for Children and Transition into Adulthood’ has been published in Endocrine Connections and sets out the care children and young people with PWS should receive.
It was written by a ‘consensus group’ which is made up of clinicians with extensive experience in the management of PWS. 

Parents and carers can refer to these guidelines to ensure our loved ones are receiving appropriate care, in accordance with the latest research and evidence. 

We have summarised the guidance by topic for parents and carers here:

PWS Management Guidance

If you need to direct clinicians to the guidelines, you should refer them to the full published article.

Social Work Guidelines:
If you ever feel unsure about the support your social worker is providing, it may help to know that all registered social workers must follow the professional standards set by Social Work England.

These are the threshold standards for safe and effective practice and apply across all roles and settings.

They clearly set out what a social worker in England must know, understand and be able to do. You can read them here:
Professional standards - Social Work England