Strength in every chromosome

MAKE A DIFFERENCE

Turning knowledge into care, and care into hope

Our Story

 

The Wolf-Hirschhorn Syndrome Trust (WHST) is a registered UK charity founded in 1994 by a group of parents united through their shared experiences of caring for children with Wolf-Hirschhorn syndrome. From the very beginning, the Trust has been driven by a deep commitment to ensuring that no individual or family affected by this rare genetic condition feels alone or unsupported.

Our mission is to provide practical support, trusted information, and a strong sense of community for everyone affected by Wolf-Hirschhorn syndrome, while also working to raise awareness and understanding among healthcare professionals, educators, and the wider public. Through education, advocacy, and collaboration, we aim to improve outcomes and quality of life for those living with the condition.

Whether you are a parent, carer, family member, friend, or professional, WHST is here to offer guidance, connection, and hope. We strive to create a welcoming space where experiences can be shared, questions can be answered, and individuals can feel empowered through knowledge, compassion, and mutual support.

WHAT DO WE DO?

The Wolf Hirschhorn Syndrome Trust is dedicated to supporting families, carers, and individuals affected by WHS. We provide guidance, encouragement, and a sense of community, helping people navigate the challenges of the condition with confidence and reassurance. Our aim is to make a positive difference in the lives of everyone we reach, offering practical support and a caring network every step of the way.

National Meetings

 

Our National Meeting brings together families, carers, and professionals affected by Wolf Hirschhorn Syndrome from across the country. This annual gathering offers the opportunity to share experiences, learn from expert speakers, and connect with others who truly understand the challenges and joys of supporting someone with WHS. It’s a welcoming and informative space designed to empower families with knowledge, support, and a sense of community



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Grants

The Trust provides grants to support families affected by Wolf Hirschhorn Syndrome in ways that make a real difference. These grants can help with essential equipment, therapies, educational resources, or experiences that enhance quality of life. Our goal is to ease financial pressures so families can focus on what matters most — the care, development, and happiness of their loved ones.



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We’re Here If You Need to Talk

Sometimes, you just need someone to listen. Our support line is available for anyone affected by WHS who wants to talk, share concerns, or seek guidance. Whether you are a parent, carer, or sibling, we provide a compassionate, understanding ear and practical advice where possible. You are never alone — we’re here to listen, support, and help you navigate the challenges you face.



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LATEST ARTICLES

Here, share news, insights, and stories from across the Wolf-Hirschhorn Syndrome community. Here you’ll find updates on research, events, family experiences, and practical information to support individuals living with WHS and those who care for them.

Make a Difference

Your support helps us provide vital information, practical assistance, and a strong sense of community for individuals and families affected by Wolf-Hirschhorn Syndrome. Every donation, no matter the size, helps us continue our work and reach those who need us most.

Follow Us

We share snapshots of life within the Wolf-Hirschhorn Syndrome community, from awareness and events to family experiences and milestones. It’s a place to stay connected and see the impact of our work in real time.