Support & Connection
You are not alone. Whether you’ve just received a diagnosis, been searching for one for years, or are supporting a family member or friend with ReNU Syndrome, there is a community here for you.
Our promise to you
ReNU Syndrome UK exists to walk alongside families affected by this condition. We are made up of families ourselves. We know how overwhelming a rare diagnosis can be — and how meaningful it is to find others who understand.
Wherever you are on this journey, our community welcomes you without age limits, without judgement, and without any expectation. Come as you are.
How we can support you
Our support comes in three main forms — you can dip into whichever fits what you need, whenever you need it.
Peer-to-Peer Support
Connect with other families who truly understand your journey. We offer online groups, one-on-one connections, and regional meet-ups across the UK.
Information & Guidance
Practical advice on navigating healthcare, education, and social care systems. We share the resources, contacts, and hard-won know-how of families who’ve been through it.
Emotional Support
A listening ear and a safe space to share your experiences. Our community includes parents and carers who’ve walked this path — no explanation needed.
Join our Family Connect group
Our Facebook Family Connect group is our warm, inclusive online space where parents, siblings, carers, and family members can connect, share stories, and learn together. It’s led by families for families — from navigating medical appointments to celebrating the small victories, every journey matters.
We meet regularly online, and in person at family events across the UK.
Not on Facebook? Get in touch and we’ll help you connect in other ways.
Family Meet-Ups & Events
Once a year, we bring families together for our Family Meet-Up & Conference — a day of connection, learning, and community for everyone affected by ReNU Syndrome. In between, we run regional meet-ups and smaller online gatherings throughout the year.
Our next major event is our Family Meet-Up & Conference 2027 — details will be shared through our Facebook Family Connect group and social channels.
Interested in hosting or attending a regional meet-up in your area? Contact us and we’ll help you connect with other local families.
Our global community
ReNU Syndrome is a global condition, and our community reflects that. This interactive map, maintained by our sister organisation ReNU Syndrome United, shows registered families around the world — building visibility, encouraging connection, and helping shape future research.
Adding yourself to the map is completely voluntary. It helps in three ways:
- Building community — connecting families in the same region for local support and events
- Advancing research — showing where the condition is present so researchers can plan studies effectively
- Driving awareness — demonstrating how many families are affected across the world
If you’re newly diagnosed
A diagnosis of ReNU Syndrome can bring a wave of emotions — relief, grief, hope, confusion, all at once. However you’re feeling right now, it’s normal. And you don’t have to work it out alone.
Here’s what we’d suggest as a first step:
- Reach out. Send us a message via email or Facebook. We’ll respond personally and connect you into the community at whatever pace works for you.
- Read a family story. Meet other families through our ReNU Warriors stories. You’ll see you’re not walking this path alone.
- Understand the condition. When you’re ready, visit our About ReNU Syndrome page for a plain-English guide to what the condition is and how it’s diagnosed.
Where else to find support
There are other organisations across the UK and internationally that provide excellent support for families affected by rare and undiagnosed conditions.
SWAN UK
Support for families of children with Syndromes Without A Name — often the community where families sit while waiting for a diagnosis.
Unique
The rare chromosome and gene disorder support group. Publishes detailed patient-friendly guides, including one on ReNU Syndrome.
ReNU Syndrome United (US)
Our sister organisation in the United States, serving families across the US and internationally.
We’re here when you’re ready
Reach out whenever it feels right for you — today, next week, or in six months’ time. There’s no wrong moment, and no wrong question.