Newsletter
June 2026
June 2026 roundup: PKU news, menstruation study, rare disease advances, brain injury AMA with Dr Putrino, plus PigPen recipes & stories
Advocacy
Pauline's advocacy, presentations, and workshops on PKU, brain injury, and mental health. Articles on Phenylketonuria, low protein treatments, head injury, concussion, research and more.
Newsletter
May 2026
A bumper bank holiday edition: May brings local elections in the UK, find out about ID’s & accessible voting. Plus, updates from the NSPKU conference, help with research.
PKU
NSPKU England 2026 conference
Updates from the NSPKU 2026 conference: Future PKU treatments (sepipapterin, kidney treatments), Home Blood Phe Monitoring, and research updates on Phenylketonuria.
ShareYourStory
Share Your Story
I believe that every story matters. If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch
ShareYourStory
Share Your Story
Every story adds to our shared understanding of PKU. The post can be anonymous, we don’t have to share your name. Join our community and share your story today
ShareYourStory
Lived Experiences of Genomic Testing
Genomic testing isn’t just about science—it’s about people. This blog explores the emotional rollercoaster of the UK Sapropterin rollout and why patient voices matter.
News
Twixtmas reading, 2025
18 reading suggestions to curl up with while polishing off leftovers. The articles include PKU research and updates; Rare Disease and advocacy articles; then Brain, neurological, and mental health reading.
Advocacy
RareSummit 25
My first RARESummit: What I Learned from a Day of Rare Voices. CamRARE’s 2025 event reflected on “A decade of impact. A future of possibilities”.
News
Nov 2025
AI and a golden age of medicine, more on UK Pharma, the latest in PKU treatments, new neurological rehab guidelines, and much more.
PKU
What’s in the treatment pipeline
Insights from Prof. MacDonald’s talk at NSPKU 2025 — Sepiapterin, JNT-517, and more — and what they might mean for adults living with PKU.
PKU
News for Oct 2025
Developments in UK Pharma, and why they matter for those with PKU or brain conditions. Another new PKU treatment. Exciting developments in concussion detection - and much more
News
Sept 2025
News for September 2025: PKU App now free, More help for long-term conditions, New PKU podcast, Four new recipe sites to try - and much more. Subscribe today for free.