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 videos for children with PWS. Watch here.

Support and community

Parent to Parent Groups 2024

Our Parent to Parent groups (P2P) are support groups run by parents for parents. These take place 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 use the contact details below:

P2P for parents of children aged 0-2 years – takes place quarterly

Contact Sheila at sinwards@pwsa.co.uk

P2P for parents of children aged 3-8 years – takes place quarterly

Contact Sheila at sinwards@pwsa.co.uk

P2P for parents of children aged 8-15 years – takes place quarterly

Contact Sarah at sbrindle@pwsa.co.uk

P2P for parents of adults – takes place quarterly

Contact Ruth at rconsterdine@pwsa.co.uk

P2P for dads of children and adults with PWS – every other month

Contact Sheila at sinwards@pwsa.co.uk