RNU UK
One name. One community. Every RNU family — supported.
About the conditions we support
RNU UK is here for families affected by any condition caused by changes in an RNU gene. That includes ReNU Syndrome (RNU4-2), RNU2-2, and any related conditions as the science continues to evolve.
What the conditions are
Rare but recognised
ReNU Syndrome and RNU2-2 are rare genetic conditions that affect how the brain and body develop. They happen when a tiny but important gene — one that helps the body read its own instructions — doesn’t work as it should.
How they affect children and adults
A wide range of experiences
Every person is different, but common features include developmental delay, intellectual disability, low muscle tone, small head size, and seizures. Epilepsy tends to be more pronounced in RNU2-2. Many families describe their child as happy, affectionate, and loved for exactly who they are.
Why so many families are only now finding answers
A new diagnosis for many families
ReNU Syndrome was only identified in 2024, with RNU2-2 following in 2025. Many families lived without answers for years or decades before finally receiving a diagnosis.
You are not alone
A growing community
Together, these conditions account for more than 1% of all unsolved neurodevelopmental cases worldwide — thousands of families, many just beginning to find each other. Whatever stage you’re at, RNU UK is here to walk alongside you.
RNU Warriors
Real families. Real stories. Real strength.
Read Samuel’s Story
Michaela shares her son Samuel’s diagnostic journey and how the RNU community changed their lives.
Read Elodie’s Story
A family’s journey through uncertainty, diagnosis, and resilience — the power of love and advocacy through complex medical challenges.
Read Finley’s Story
Claire shares how her family searched for 19 years for answers, and how Finley’s courage is now turning into hope and support for every RNU family.
Find your way
Help us reach more families
Every donation helps us support more families and raise awareness of RNU.
RNU UK is awaiting charity registration. Once registered, we’ll be able to claim Gift Aid on eligible donations from UK taxpayers.