My notes from conferences and workshops

Review of the EU Guidelines on PKU

The 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.

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.

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...

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.

What is LNAA?

Large Neutral Amino Acid (LNAA) treatment for PKU This is a supplementary therapy for PKU which is in use in some European countries. It is particularly aimed at those with mild PKU

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.

Art and Music Therapy in a Pandemic

The use of music as a reabilitation tool alongside other therapies had never occurred to me. Elizabeth Nightingale, the Neurological Services lead at Chiltern Neuro and Medical services provided an introduction to this fascinating field.

NSPKU 2020

This report covers the Saturday morning session which includes the latest research and legal wrangling on PKU.

Webinar - Healthy eating on a low protein diet

Louise kicks things off by saying that “in theory a Low Protein (LP) diet sounds very healthy as it should include a lot of vegetables and fruit.” But her research has found that it can be difficult to eat healthily and watch your weight on a LP diet. Fortunately, she has a few answers.
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