Hindsight is a Wonderful thing!
By Lin Edwards, FPWR UK board member and Grandparent to William Seven year ago, our grandson William was 3 months old, and we were struggling… Read More »Hindsight is a Wonderful thing!
Good News and Bad News
In recent days we have seen the highs and lows of research and our community’s mission to ease the and eliminate the adverse challenges of… Read More »Good News and Bad News
Why we do it
This Blog was written by Catherine Shaw, Chair of FPWR UK When you get a Prader-Willi diagnosis, you can feel so alone, such a rare… Read More »Why we do it
The challenge of being ‘Rare’
We live in an exciting time when new treatments for PWS are tantalisingly close. New insights pave the way for future treatments and new knowledge… Read More »The challenge of being ‘Rare’
‘If only I knew then what I know now’…
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’…
FPWR UK – part of a Global effort!
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!