I heard this a lot from parents of children with PWS not long after Robyn was diagnosed. At the time it was really hard to… Read More »‘If only I knew then what I know now’…

Many of you will be aware that the 2021 conference recently finished and as well as giving us lots of useful information on important concerns… Read More »FPWR UK – part of a Global effort!

This week our sister organisation FPWR in the USA are running their fantastic conference. There is so much to be optimistic about with new treatments… Read More »Nicola explains why fundraising is vital

We are in an exciting and unprecedented period of PWS research. DCCR and Carbetocin (LV-101) have shown promising results following phase 3 studies. Other interesting… Read More »What is a Clinical Trial?

My support for FPWR-UK started 8 years ago when I was asked to take part in a One Small Step Pub walk to support a… Read More »The Brownie’s Fundraising Event

This year FPWRUK are helping fund a project looking at ‘How is the Epitranscriptomic Signature of Active AGRP Neurons disrupted in PWS?’.  This project is… Read More »Funded Research for 2020 by FPWR UK