Lived Experiences of Sapropterin
An NSPKU presentation on a forthcoming PhD “to collect information about the rollout and response testing for sapropterin treatment in England since its availability on the NHS for all ages in 2021”.
News
Review of the EU Guidelines on PKU
The guidelines...help inform policy changes and establish the best treatment practices in places where those are still being developed, and to support those in areas where treatment falls short.
Brain Injury News, June 2024
- A brain injury manifesto for the UK election
- Two research opportunities
- Share your views on medicine shortages.
- And tell the government what you think of PIP
PKU News, June 2024
Update on sepiapterin and other groundbreaking treatments. A primer on the PKU injection treatment PegPal, AKA Pegvaliase or Palynziq. A new way to distribute treatments for Rare Disease?
PKU future treatment update
The NSPKU conference held from 17-19 May 2024 included an update on possible new treatments for PKU. These are my notes from the sessions on sepiapterin, mRNA, gene therapy, solute carrier 6, and options for PegPal.
Brain injury news, May 2024
This research study is looking at ways to improve mood after brain injury by taking part in rewarding activities
PKU news May 2024
Looking for a massive online resource with recipe & product ideas, managing PKU and fitness, and honesty about living with PKU? Check out Tristan’s blog...
Kickstarting The Red Hat Stories
This short story anthology is my first fiction book, and the choice to try a Kickstarter was strategic. The Kickstarter campaign will run until May the 4th (Star Wars Day!)
Starting the Conversation
We wanted a space where adults with PKU felt able to hold an open discussion about managing PKU, and to collect data about our concerns in real time.
Newsletter 8 - January
How a new perspective might help you in 2023. Another new PKU treatment(!), & helping with PKU research. Plus, 5 ways to wellbeing through kindness. (Jan 2023 newsletter)
