Get in Touch
Whether you’re a family, a professional, a supporter, or a member of the media, we’d love to hear from you.
Whether you’re a family, a professional, a supporter, or a member of the media, we’d love to hear from you.
We’re here when you’re ready
There’s no wrong reason to reach out. If you’ve just received a diagnosis, if you’ve been on this journey for years, or if you’re supporting someone else — we’re here to help.
ReNU Syndrome UK is run by volunteers, most of whom are families ourselves. We aim to respond within a few days, and we’ll always come back to you with kindness, honesty, and the time you deserve.
How to reach us
Email us
The best way to reach us — for anything from a first hello to a detailed question.
Join our community
Connect with other families in our warm, inclusive Facebook Family Connect group.
Send us a message
Prefer to write to us directly? Use the form below and we’ll come back to you as soon as we can.
We aim to respond to all messages within five working days. If you need urgent medical support, please contact your GP or NHS 111.
What can we help with?
Newly diagnosed?
We’ll connect you with our community, share resources, and be a listening ear as you find your footing.
A professional?
For clinicians, researchers, therapists, and educators — we’re happy to talk, share information, or explore how we might work together.
Media enquiries?
We’re always open to speaking about ReNU Syndrome and the families affected. Please get in touch and let us know your deadline.
Want to help?
Fundraising, partnerships, sponsorship, or volunteering — we’d love to talk.
Follow us
Stay up to date with news, events, and stories from our community by following us on social media.
Registered details
Charity name: ReNU Syndrome UK
Company number: 17255929
Registered office: 24 Petrel Way, Morley, Leeds, LS27 8GB
Legal structure: Private company limited by guarantee
Charity status: Application in progress
Governing document: Articles of Association
For more about how we’re run, see our Governance page.
Whenever you’re ready
No question is too small, no story is too complicated. When you’re ready to reach out, we’ll be here.