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

Sully

Eve

Eve

Donna

Donna

Freya

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.

Our community
Connect with families who understand

Get the answers you need

Navigate your journey with confidence. Access reliable, medically-reviewed information and practical resources on PDH deficiency.

PDH Information
Get the answers you need

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.

Get involved
Help us create a better future
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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.

About our foundation
Bringing together
Dozens of families
Meeting
Every year
To share
Lived experience & hope

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.

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.

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.

Support in your pocket, 24/7

Our online community means there is always someone awake to answer a late-night question or offer a listening ear when you need it most.

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.

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.

Turning donations into discovery

Every penny we raise goes directly into the vital research that brings us one step closer to better treatments.

Help fundraise with us

View all events

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.

Starting on
21/9/24
£5000 goal

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

Starting on
26/4/26
£2000 goal

Our impact stories

View all stories
Enjoy every second - all we can do is hope for the best, celebrate every achievement and milestone and embrace our warriors for who they are.
Lucy, Mum
Next
Eve is the happiest soul... She will overcome all obstacles in her way, very independent and sassy. Doesn’t let PDH define her!
Jenny, Mum
Next
"The Freya Foundation was born from lived experience - we understand your journey because we've walked it ourselves. We combine that deep empathy with strength, expertise, and genuine community connection to ensure no family faces PDH alone."
Kelly, Founder
With thanks to