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“Research is very important to us because it will enable new therapies, medications and treatments that could significantly improve the quality of our boys lives. “

We can and
Together we will

Prader-Willi Syndrome (PWS) is not incurable.

It just hasn’t been cured yet.

Let’s make this happen together.

How We Help


Research is key!

FPWR UK raises money for the sole purpose of research. Research will help us to improve the lives of individuals with PWS

How Everyone Helps



It can be very simple, and there are many ways to get involved:

  • One Small Step Walk
  • Donate
  • Run
  • Much more

How You Help

Who We Are

Global Registry

By participating, individuals and families of those with PWS become part of the research team, helping uncover trends which inform new directions in therapies and treatment.

Meet PeeWee

PeeWee is our FPWR UK mascot and supports our One Small Step Walks and other fundraising events. He travels all over the world to make new research discoveries, raise money to invest in research and have fun!

Help PeeWee make new research discoveries by Donating Today or Fundraising for FPWR UK


Mission Statement

To eliminate the challenges of Prader-Willi Syndrome (PWS) through the advancement of research.

Research Progress

November 21

FPWR UK Annual expenditure chart for the year 2021/2022

FPWR UK are very proud to state that we have been able to commit 89.5% of the years funding to research for Prader – Willi Syndrome! All in aid to improve the lives of anyone who is impacted by PWS. Thank you to all who have been involved!  
August 9

2022 funding project – Genetic Determinants of Behavioural, Physical and Physiological Characteristics of PWS

“This analysis has the potential to identify new targets for therapeutic intervention in PWS and potentially other forms of hyperphagic obesity” – The FPWR UK has funded £70,000 to this study in the 2021/2022 and 2022/2023 business year/s  
November 4

Carbetocin approval meeting with FDA

Levo Therapeutic’s New Drug Application (NDA) for Carbetocin as a treatment for PWS has been scheduled for a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held on November 4th, 2021.
September 8

DCCR extension results

long term data further demonstrate that DCCR significantly reduced hyperphagia, as well as improved body composition, behaviors, and endocrine and metabolic measures over 52 weeks
August 6


Carbetocin, a drug developed by Levo Therapeutics, achieves statistically significant results in the treatment of hyperphagia following a phase 3 trial.
June 11

Phase 3 DCCR trial top line results

Top line phase 3 results for DCCR, a drug to treat hyperphagia, shows statistically significant improvements in hyperphagia for patients with severe symptoms. It also saw a significant reduction in body fat mass. Studies will continue to evaluate this promising drug.
May 14

More than 2,000 patients are enrolled in the Global PWS Registry

July 14

Awarded Drs Chamberlain and Carmichael pilot funding in PWS genetics research

June 14

Established the PWS Clinical Trials Consortium

January 14

Launched the Global PWS Registry