PKU

Advocacy

Rare Creatives’ Lives

Catch up on YouTube: "Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts". All guest creatives have PKU in the family:

Recipes

Low-protein Waldorf Salad

An easy, & PKU-friendly Waldorf salad for a quick, healthy lunch. 1g protein / 1 phe in the UK. I use pine nuts for the protein as you get more 'nuts' per serving.

News

May 2025

Could you walk 24 miles (39 km) in one day? Or try a different challenge this PKU awareness month. Plus, a low-protein recipe, and brain injury on stage.

News

April 2025

Packed with Easter tips, ideas for school holiday baking, new brain injury research, and a chance to report on the NSPKU conference.

The origins of PKU treatment

Prof. Anita MacDonald presented the origins of PKU treatment on an afternoon of PKU legends, both past and present.

Low Protein

Financial Support

Information on financial support for those in the UK with Inherited Metabolic Disorders (IMDs). Including links to information for support other countries (below article).

What is PKU?

Explaining PKU, Phenylketonuria, a rare inherited metabolic condition treated by a low-protein diet.

News

Community Spotlight February

New PKU books, home phe monitoring update, Mental Health Insights & Rare Disease Day, 28 February 2025

News

When the baby is not OK

A memoir of Motherhood and PKU. “When the Baby Is Not OK: Hopes & Genes” by Jennifer J. Brown

Conferences

Metabolic Support UK

Similar to the NSPKU, MSUK was started by a family trying to find information about their child’s rare disease. However, MSUK encompasses all IMD’s, of which PKU is the most common

News

Share your challenges of Living with PKU

Take part in paid market research on the challenges of living with PKU. The online session is 90 minutes, and you will receive £100 compensation for your time.

Low Protein

PKU Mac & Cheese

An easy, low-protein macaroni and cheese recipe, with options for adding more protein if your PKU allows.