Join our community

Register with us to receive free tailored PWS support and information and hear the latest news about PWS

Joining our community enables us to support you in the best possible way, by giving you advice tailored to the relevant stage of your PWS journey, before you know you need it! 

Once you're registered with us, we can ensure you're getting the very latest PWS information relevant to the age and stage of your person with PWS.
This means you can make informed decisions and get the right support in place at every step. 

It's free!

Registration costs nothing,  and all our support, advice and advocacy services are free for people with PWS and their families/carers.

What will you send me?

We promise to only send information that we think is relevant and useful for you.


This might include:



  • Developments in PWS research
  • Support and information around health, education and social care
  • Community events, meet ups and activities
  • Opportunities to get involved in research trials
  • News from the PWS community and about PWSA UK
Two young women with Prader-Willi Syndrome hugging standing in front of a wooden lodge and a tree

What happens if I don't want to register?

That's completely up to you!


However, if you do not register with us, we will not be allowed to send you advice, support or information. This means you might miss out on hearing about events or important updates, even if we think they are relevant to you. This is because of GDPR.


You will still be able to access help and information from us via our website or by submitting a support enquiry, even if you're not registered.

What is GDPR?

The General Data Protection Regulations (GDPR) require us to ensure that any information that we have about you is held correctly so that we can continue being in contact with you. We don’t pass any of your details on to anybody else and we only use personal details to improve our support services. It also means if you call us again, we will have your details to hand.

Become a member

As well as registering with us you can also choose to join as a member of PWSA UK


  • Make Your Voice Heard: Share your perspectives to guide our strategies and priorities.
  • Active Participation: Join the Annual General Meeting (AGM), vote for trustees, and play a role in our mission.


You can become a member by filling in the registration form and selecting 'become a member'

Membership is completely free, with no ongoing commitment or expiry.