Strength in Community Courage in Action
The Freya Foundation stands beside every family affected by PDH deficiency. We offer real support, clear answers, and a caring community that believes in brighter tomorrows, no matter how tough the journey.
Sully
Eve
Donna
Freya
We help families affected by Pyruvate Dehydrogenase (PDH) deficiency find strength, clarity, and resilience.
As the first and only UK charity to commission research into PDH, we are dedicated to advancing medical knowledge while providing compassionate, personal support to ensure no one faces this journey alone.
Connect with families who understand
You are not alone. Join our caring community to share experiences, find solidarity, and build connections in a safe and trusting space.
Get the answers you need
Navigate your journey with confidence. Access reliable, medically-reviewed information and practical resources on PDH deficiency.
Help us create a better future
Your support can change lives. Contribute to vital research that brings new possibilities and advances our mission to find better treatments.
.jpeg)
Support for rare conditions must be guided by the voices and experiences of every family.
Families affected by PDH deficiency deserve care, understanding, and a community that stands with them, ensuring no one ever feels alone on their journey.
We’re proud of the impact of our work.
Over the last 10 years, we have worked alongside families, medical professionals, and research institutions to transform the landscape of support and care for those affected by PDH deficiency. Together, we've built a community where no one faces this journey alone.
Guiding you clearly from day one
We teamed up with Great Ormond Street Hospital to create the simple, clear family guide we wish we’d had when we were first diagnosed.
Celebrating a decade of standing together
It’s been ten years since we started, and we’ve grown from a kitchen table idea into a lifeline for families across the UK.
Taking our voice to Europe
We’ve joined forces with European experts (MetabERN) to make sure PDH care standards are being raised beyond just our borders.
Real hugs and real understanding
Our annual family meetups give us all a chance to relax, connect in person, and just be ourselves with people who truly "get it".
Helping others understand our world
We provide the tools and resources that help schools and local fundraisers understand what life with PDH actually looks like.
Building a team around your child
We bridge the gap between families and medical experts, getting everyone on the same page to support your child’s needs.
Leveling the playing field for care
We’re fighting to ensure that every child gets the same expert-level advice and care protocols, no matter which hospital they visit.
You never have to do this alone
We have built a safe space where the fear of a new diagnosis is replaced by friendship, and confusion is met with clarity.
Getting answers sooner
By raising awareness, we are helping medical teams identify PDH earlier, giving new families a head start on getting the right care.
Help fundraise with us
Kelly’s 10-Marathon Challenge
Celebrating ten years of the Freya Foundation, this challenge paid tribute to the efforts that stands for everything we are today.
Fundraise For Us
Have an idea? Whether it’s a bake sale or a bungee jump, we’ll support you every step of the way with a Puffin Pack and t-shirt.
Zoe’s London Marathon 2026
Zoe is lacing up her running shoes to take on 26.2 miles through the capital, raising vital awarenes
Our impact stories
