Recipes
Ginger and dark chocolate cookies
Delicious, chewy ginger and chocolate cookies with an orange hint. These are low protein and protein-free options for PKU and other restricted diets.
PKU
Articles on PKU (Phenylketonuria) and low protein diets; including research, treatments, new products, and more.
Eating out with PKU
Eating out can be a challenge for those of us following a low-protein (or PKU) diet. Here are some tips and recommendations.
Writing
Low protein books
A selection of low protein books for adults and children. Gift ideas for those new to PKU and inherited metabolic disorders. Plus, a free gift for subscribers.
PKU at Christmas
Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included PKU and low protein menu suggestions & recipes.
Recipes
Fragrant carrot soup
A low protein (possibly protein-free depending on your regime) curried carrot soup for chilly days. Makes an easy PKU meal with 10 mins prep and 30 minutes cooking time.
Ensuring prescriptions on the NHS
Challenges to our treatment regime shouldn’t happen. Sadly, this isn’t an ideal world. These questions are annoying and exhausting, and it is important to be firm and clear in your response.
News
Join the conversation!
Joining is a breeze. Sign up for free today and start contributing to the conversation—don’t miss out on the fun!
Conferences
Adults’ experience of PKU clinic
There was a wide discrepancy in the services which UK adults received at their PKU appointments.
Conferences
Rare Minds Workshop
The NSPKU contacted a mental health charity specialising in supporting those with rare diseases—Rare Minds.
Conferences
All of our voices, together
The fight for sapropterin means the NSPKU team now know a great deal about the licensing process. This bodes well for future campaigns. As does the experience, which shows that the advocacy of patients tipped the balance.
Advocacy
PKU United panel
One of the consistent highlights of NSPKU conferences over the years has been the patient panel. This year, the panel was called PKU United. Because we are stronger as a united community.
Conferences
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”.