Finding Answers

The Freya Foundation was founded by Freya’s parents, Kelly and Dave, after discovering how little information and support existed when their daughter was diagnosed with PDH deficiency. They wanted to make sure other families didn’t have to go through the same experience alone.

The Freya Foundation focuses solely on PDH deficiency and is led by families who live with the condition every day, working hand‑in‑hand with medical experts. That mix of lived experience and specialist knowledge helps keep support real, responsive and relevant.

Support ranges from one‑to‑one contact, counselling and family meet‑ups to clear information and research advocacy, tailored to what each family needs at different stages of their journey.

The charity is based in the UK but increasingly connects with families and clinicians across Europe and beyond, especially through its work with MetabERN and international research projects.

The team keeps things intentionally personal: real conversations, direct contact with the same people over time, and a focus on building relationships rather than ticking boxes or following rigid processes.

The Freya Foundation collaborates with metabolic and neurology teams in the UK and Europe, including Great Ormond Street Hospital and MetabERN, and has helped drive key PDH research projects.

People support the charity in all sorts of ways – from taking on fundraising challenges to volunteering skills, joining events or making regular donations to sustain research and family support.

Reach out through the website or get in touch with the team – they'll learn about your situation and suggest the best way to connect. It could be a private group, an event, a 1-to-1 conversation, or an online forum depending on what feels right for you.

Yes. Private groups are exactly that – what is shared stays within that space, and real names are optional. We prioritise trust and safety above all else.

That's completely okay. You can listen, read others' experiences, and take as much time as you need before (or if) you share anything. Many people in the community have done exactly this.

Yes. We organise annual family weekends, regular regional meet-ups, and other gatherings throughout the year. Some are social, some are focused on learning. Check the events page for what's coming up.

Absolutely. Parents, grandparents, siblings, partners, friends – anyone supporting or affected by PDH is welcome in the community.

Many community members volunteer as peer mentors, help moderate forums, share resources, speak at events, or fundraise. There are lots of ways to give back in a way that feels manageable for you.

Groups are moderated by experienced community members (often parents further along the journey) who understand the culture and needs of PDH families. We have clear guidelines about respect, confidentiality and care.

We are a small, family-led foundation, which means your donation goes directly toward making a tangible difference, not into heavy administrative costs. Your funds help us provide immediate personal support for newly diagnosed families, host our community events, produce vital educational resources, and fund active PDH research.

Absolutely! We love hearing your creative ideas and are here to support you every step of the way. Simply get in touch with us through our contact page, and we can provide you with advice, a sponsorship form, and help spreading the word to our community.

The easiest way is to set up a fundraising page through a platform like JustGiving, which sends the money directly and securely to us. If you have collected cash or prefer to do a direct bank transfer, please send us a quick email and we will gladly provide you with our charity bank details.

Not at all. While our foundation was built by families living with PDH, our community is open to absolutely anyone who wants to stand with us. Whether you are a friend, a colleague, or simply someone touched by our mission, we welcome your energy and support with open arms.

Yes, we welcome partnerships with businesses that share our values and want to make a meaningful impact. Whether you are looking to name us as your "Charity of the Year" or want to organise a team-building fundraising challenge, please reach out so we can discuss how to work together.