Our Community

The Freya Foundation is built on the belief that no family should face PDH deficiency alone. Our community is where people find solidarity, share hard truths and hopeful moments, ask questions without judgment, and discover that others genuinely understand their journey.

When you walk this road, you need people who get it

A PDH diagnosis changes everything – and often overnight. The appointments, the uncertainty, the moments of grief mixed with small wins – it all makes more sense when you're walking it alongside people who have been there too.

The Freya Foundation community is not another formal program or service. It is families checking in on each other at 2am, sharing what actually worked, celebrating milestones together, and reminding each other that the difficult days do not define the whole story.

Multiple ways to show up, however feels right

You might join our private Facebook group with other parents of children with PDH, meet families in person at a weekend gathering, ask questions in an online forum, find a mentor who has walked this road longer, or simply scroll and listen if you're not ready to speak yet. There is no one way to be part of this.

Volunteer opportunities

Want to give back? Help with events, moderate forums, create resources, fundraise or simply support newly diagnosed families by being the voice of lived experience.

Workshops & Q&As

Regular sessions on everything from nutrition and seizure management to school transitions and emotional wellbeing – led by families, clinicians and specialists.

One-to-one mentoring

If you are newly diagnosed and want to talk to someone who has been on this journey longer, we can introduce you to a parent mentor who gets it.

Private Facebook group

Ask questions, share resources, swap experiences and everyday wins in spaces designed just for PDH families. Some are open, some are private depending on what you need.

Family events

From relaxed get-togethers to awareness days and community meetups, our family events bring the PDH community together in person and online. A chance to meet the people behind the usernames, let your children play, and simply be around others who just get it.

Support groups

Private, confidential spaces – online and sometimes in person – where families can talk openly about the hard stuff, share tips and feel held by people who understand. Moderated by experienced community members.

Our impact 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

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

Questions families often ask

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.

Ready to connect?

Reaching out to a community for the first time takes courage. We promise to meet you with warmth, understanding and no judgment – because we've all been where you are or are standing beside someone who is.