About Us
Founded by families for families, ReNU Syndrome UK is the UK’s first charity dedicated to supporting everyone affected by ReNU Syndrome.
Who we are
ReNU Syndrome UK is a UK-based organisation established to support individuals and families affected by ReNU Syndrome — a rare genetic condition caused by a variant in the RNU4-2 gene. We exist to raise awareness, improve understanding, and enhance the quality of life for everyone whose life is touched by this newly-identified condition.
We are a private company limited by guarantee, currently in the process of applying for charitable status. Our work is guided by the families we serve and the professionals who care for them.
Our Vision
A world where every person affected by ReNU Syndrome in the United Kingdom is understood, supported, and empowered to live a full and meaningful life — with earlier diagnosis, equal access to care, and a strong, informed community standing beside them.
Our mission
ReNU Syndrome UK exists to raise awareness, improve understanding, and enhance the quality of life for individuals and families affected by ReNU Syndrome.
We do this by:
- Educating the public and healthcare professionals
- Building supportive peer networks for families and carers
- Providing practical assistance and small grants
- Facilitating workshops, Q&A sessions, and opportunities for families to engage with clinicians, researchers, and other professionals
- Working with policymakers and partner organisations to improve awareness, healthcare pathways, and inclusion within rare disease strategies
- Collaborating with researchers, clinicians, and partner organisations to promote knowledge, awareness, and best practice
Our five pillars
Our work is organised around five core purposes. Together, these define the public benefit ReNU Syndrome UK exists to deliver.
Advancing Education
We improve public understanding and professional awareness of ReNU Syndrome through conferences, campaigns, publications, and accessible online resources — helping ensure earlier recognition and better-informed support for those affected.
Relieving Need
We support families through information, guidance, peer support, and signposting to relevant services — and, where resources permit, through small grants and practical assistance to help address needs arising from disability, illness, or caring responsibilities.
Promoting Social Inclusion
We reduce isolation and improve wellbeing by creating opportunities for families to connect — through family events, our annual conference, workshops, online communities, and everyday moments of mutual support.
Promoting and Protecting Health
We help families access accurate information about diagnosis, treatment pathways, therapies, and support services, and we work to increase awareness of ReNU Syndrome amongst healthcare professionals so that care can start earlier and go further.
Supporting Knowledge Sharing and Research Collaboration
We connect families with clinicians, researchers, and other organisations working within the field of rare diseases — making sure that emerging understanding and best practice reach the people they matter to most.
Our commitments
Everything we do is guided by seven commitments to the families and community we serve.
Increase awareness and understanding of ReNU Syndrome amongst families, healthcare professionals, educators, and the wider public
Provide information, advice, and peer support to affected individuals, families, and carers
Reduce social isolation and promote inclusion by facilitating opportunities for families to connect and share experiences
Encourage earlier diagnosis and improved healthcare pathways through education and engagement with healthcare professionals
Signpost families to appropriate services across health, social care, education, and welfare
Support the communication and dissemination of research and clinical knowledge relating to ReNU Syndrome
Provide practical assistance and small grants to support individuals and families affected by ReNU Syndrome
How we listen
Our priorities and activities are shaped by the families we exist to support. The Trustees have consulted widely — through online engagement with families across the UK and through formal feedback from nineteen families attending the inaugural ReNU Syndrome UK Family Meet Up & Conference in June 2026.
That feedback confirmed the importance of awareness, family support, social connection, education, and practical assistance — and reinforced the direction we’ve set out above. We will continue to listen, and to adapt.
Our status
ReNU Syndrome UK is a private company limited by guarantee, currently in the process of applying for charitable status with the Charity Commission for England and Wales. Once registered, we will be able to claim Gift Aid on eligible donations, and we will continue to publish updates on our progress here.
The purposes described on this page are set out in full in our Articles of Association, our governing document. If you’d like to see the full version, please get in touch.
Get involved
Whether you’re a family, a healthcare professional, a researcher, or someone who simply wants to help — there’s a place for you in our community.