I have a family member with PWS

Support for you

Parent to Parent Online Groups

Our Parent to Parent groups (P2P) are support groups run by parents for parents. These take place monthly or quarterly online and are a place to share experiences, discuss different topics and speak to other parents. It would be lovely to have you join us, and if you would like to be added to the invitation list or find out more, please register 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.

All About Me

This is a booklet where adults with PWS can write down details of their routine, what makes them unique and what they feel is important for people to know about them. This can then be given to people such as college staff, carers and extended family members. You may want to help them fill it out. 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.

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