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.

Consensus

‘Prader–Willi Syndrome – guidance for Children and Transition into Adulthood’ has been accepted for publication by Endocrine Connections.
It was written by a ‘consensus group’ which is made up of clinicians with extensive experience in the management of PWS from the PWS specialist clinics in the UK as well as trustees of PWSA UK. A parent/carer version has been drafted (by Dr Anne Livesey) and is currently being reviewed by a group of parents and the Medical Advisory and Research Committee members. Read it 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.

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

Pilates videos for children with PWS. Watch here.

Support and community

Parent to Parent 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.