Our Story
The Wolf-Hirschhorn Syndrome Trust (WHST) was established in 1994 by a dedicated group of parents whose children had been diagnosed with Wolf-Hirschhorn syndrome, a rare genetic condition. Their shared experience highlighted a lack of information, awareness, and support available to families in the UK at the time.
The Trust grew from an earlier parent-led support network founded through the vision and determination of Chris Hilder, who sought to connect families facing similar challenges and ensure that no one navigated the condition alone.
From its beginnings as a small support group, the organisation developed into a registered charity providing practical and emotional support to individuals with Wolf-Hirschhorn syndrome and their families across the UK. The Trust has historically focused on:
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Sharing reliable information and guidance
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Connecting families through newsletters, meetings, and networks
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Raising awareness of the condition
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Supporting research into Wolf-Hirschhorn syndrome
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Providing grants and practical assistance where needed
Since its founding, the Trust has remained rooted in its original purpose: family-led support, shared knowledge, and advocacy for a rare and often misunderstood condition.
Our People
The Wolf-Hirschhorn Syndrome Trust is led by a dedicated group of volunteers including our Chair, Trustees, and Committee members, many of whom bring lived experience of Wolf-Hirschhorn syndrome. United by a shared commitment to supporting families and raising awareness, they guide the Trust’s work with compassion, knowledge, and a deep understanding of the community we serve.
If you would like to support us with your time, please reach out to us on the details below.
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.