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“Right now, all we can do is manage PWS as best we can, tirelessly building our knowledge and raising funds for research. There is a cure, and with your help, we can find it!”

We can and
Together we will

Our mission is to eliminate the challenges of Prader-Willi Syndrome (PWS) through research and therapeutic development.

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How We Help

Research

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

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How Everyone Helps

Fundraising

Fundraise!

There are many ways to get involved:

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

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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!

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

PeeWee

Mission Statement

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

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Research Progress

2025
March 27
DCCR Approval in the USA

The FDA has approved DCCR (Diazoxide Choline Controlled-Release) for the treatment of hyperphagia in individuals with Prader-Willi Syndrome (PWS)! This is the first approved medication option for the incessant hunger that affects the majority of people with PWS. This approval is a huge leap forward in improving the health and

2024
March 15
Pitolisant earns FDA orphan drug status ahead of Phase 3 trial

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Harmony Biosciences’ pitolisant to treat daytime sleepiness in people with Prader-Willi syndrome (PWS).

2023
December 17
Six Drug Trials at Phase Two or Phase Three

Six drugs (not including Soleno’s DCCR which has progressed past phase 3) are either moving into a phase two or phase three trial. This also includes Carbetocin which has been bought over by Acadia. There is the real prospect of bringing three of those drug trials to the UK.

September 26
DCCR Reports Positive Results

Soleno Therapeutics revealed positive outcomes from the randomized withdrawal phase of an extended treatment study of DCCR (Diazoxide Choline) tablets. DCCR’s primary purpose is to treat hyperphagia but it’s also had efficacy in other areas including body composition and behaviours.

July 24
Exciting New Treatment May Reduce Disruptive Behaviors in PWS

Recent evidence from FPWR-supported studies shows that Vagus Nerve Stimulation (VNS) may reduce temper outbursts and other disruptive behaviours in individuals with PWS.

2022
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  

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

2020
August 6
Carbetocin

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.

2019
May 14
More than 2,000 patients are enrolled in the Global PWS Registry