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”.
Advocacy
#PKUDay2024
Exciting new research and clinical trials in the UK, which you can support for PKU Day 2024. June 28 is a chance for this rare disease community to raise awareness of the inherited metabolic condition, Phenylketonuria (PKU).
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?
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...
Speaking at the WI
I encourage fellow authors to explore speaking at local groups. They are a powerful platform not just for income, but for raising awareness and connecting with communities.
Neuro Navigators
Neuro Navigators help patients to understand the process of neurological rehabilitation. How to find them in London.
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.
