Advocacy

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.

Happy Birthday to Living with PKU

Living with PKU hit NUMBER 1 in the Genetics hottest releases list. It also made the top 6 bestsellers list, up there with Richard Dawkins and Adam Rutherford.

Campaign update at NSPKU2022.

Liz Twist MP spoke to the conference in her role as Chair of the All Party Parliamentary Group (APPG) for PKU. She began by extolling the difference which Sapropterin makes for those who respond, but she also acknowledged the need to work for those who do not respond.
The Alliance of Independent Authors - Author Member