Who we are

Chordoma UK was established by Gerald and Susan Fitz-Gibbon as a result of Susan’s diagnosis of chordoma some years before. Initially the aim was to simply raise funds for research being carried out at UCL Cancer Institute and to drive awareness of chordoma within the UK clinician and patient communities. Today Chordoma UK continues to financially support ground breaking research initiatives at UCL Cancer Institute and other institutions whilst underpinning the UK chordoma community through support and information resources.

The Rt Hon Professor the Lord Darzi of Denham KBE


Lord Darzi holds the Paul Hamlyn Chair of Surgery at Imperial College and the Chair of Surgery at the Institute of Cancer Research. He is an Honorary Consultant Surgeon at the Imperial College Healthcare NHS Trust and the Royal Marsden NHS Trust Hospitals... Read More

Gerald Fitz-Gibbon

Founder & Trustee

Gerald founded Chordoma UK with his late wife Susan in 2013 with the aim of supporting ground breaking UK research into Chordoma and making life just a little easier for other chordoma patients and their families through the provision of easily accessible.. Read More

Richard Sutton-Mattocks


Richard Sutton-Mattocks joins the Board of Chordoma UK having previously served over 7 years as Chairman of the UCL Cancer Institute Research Trust, supporting cancer research at the UCL Cancer Institute. In that role he assisted with the development of.. Read More

Jerry del Missier

Founder and Executive Chairman, Copper Street Capital

Jerry is the founder and Executive Chairman of Copper Street Capital LLP, an independent investment firm. Previously, he was a senior executive of Barclays Bank Plc in London and New York for many years and also worked at Bankers Trust and Bank of Nova Scotia..
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Ed Major


Ed has built his professional career in the marketing world within professional services and technology companies. He has worked for large companies, including Gartner and Oracle, as well as start ups, such as Orca Social, that he also co-founded. He currently... Read More

Sylvie Leslie


Sylvie is originally from France and has been living in the UK since 1998. She is married and has been working in the property industry for over 15 years. Sylvie was diagnosed with Chordoma in 2017 and has since made it her mission to raise awareness and... Read More

William Fitz-Gibbon


William joined the board of Trustees in 2022 having supported and participated in fund raising initiatives for Chordoma UK for many years. William brings a youthful enthusiasm to the board and is widely experienced in his professional field of Partner Marketing ... Read More

Adrienne Flanagan MD, PhD

Scientific Adviser

Dr. Flanagan is Professor of Musculoskeletal Pathology at the University College London and Clinical Lead and consultant histopathologist at the Royal National Orthopaedic Hospital in Stanmore. She runs an active research program on bone cancer, and has...
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Dr Inga Usher

Clinical Research Fellow

Inga is a surgical doctor undertaking her PhD at University College London. Her research focuses on the genomics of chordoma and understanding this alongside clinical data. She has helped to establish the UK National Chordoma Cohort – a NIHR portfolio... Read More

Want to make a donation?

You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

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How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

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If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

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