Better Understanding = Better Lives



Our campaign to improve awareness of PWS among professionals and policy makers.


With the right care and support, people with PWS can now live much longer and healthier lives. However, in too many cases, PWS is still being mismanaged - often with devastating consequences.



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PWSA UK House of Lords Event - May 2025

On Wednesday 14th May, we hosted an event for policymakers at the House of Lords to raise awareness of the challenges faced by people with PWS.

We know what good care and support looks like for PWS, but we need policymakers and professionals to understand this too, and to commit to implementing best practice.

At this event, we met with MPs, Peers and key stakeholders across from the health and care sectors to educate them about PWS, and engage their focus around three key challenges:

  • Hyperphagia - the persistent insatiable hunger people with PWS feel and the implications this has for support needs and mental capacity.

  • The absence of warning signs in a medical emergency - how serious injury and illness can be missed in people with PWS.

  • The need for specialist support for people with PWS across all areas of life.

We summarised this for them in a simple awareness message to pass on and remember...

Our awareness message

  • Persistent hunger


  • 2. Take measurements

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  • 3. Approve budget

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  • 4. Start project

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  • 5. Finish on schedule

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