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Rare tumour team wins world class status

A Cambridge team dedicated to treating patients with rare tumours has today (Wed 2 June) been named as an official centre of excellence – making it one of just a handful across the world.

The Pheochromocytoma and Paraganglioma Group at Cambridge University Hospitals NHS Foundation Trust (CUH) was awarded the coveted status by the Pheo Para Alliance. It is an internationally recognised leader in patient advocacy and raising awareness of the condition.

Pheo Para Alliance logo The Pheochromocytoma and Paraganglioma Group
Pheo Para Alliance - sign of excellence

A pheochromocytoma is a rare tumour that usually grows in the adrenal glands, above the kidneys, or can arise outside of the adrenal gland and is called a paraganglioma.

The adrenal glands release hormones, which control functions like metabolism and blood pressure, but the tumour triggers much higher hormone levels, causing high blood pressure, which can damage the heart, brain, lungs and kidneys.

Most pheochromocytoma tumours are benign, but about 10-15 per cent are cancerous, and can spread to other parts of the body. They are most commonly found in adults aged 30 to 50, but children make up about 10 per cent of cases.

Management of the condition in Cambridge is led by a multi-disciplinary team including specialists in endocrine disorders, oncologists, radiation oncologists, specialist nurses, pathologists, nuclear medicine physicians, clinical geneticists, surgeons, anaesthetists, paediatric specialists and a number of other healthcare professionals.

Head and shoulders of consultant endocrinologist Dr Ruth Casey Professor Eamonn Maher - head and shoulders
Head and shoulders of consultant endocrinologist Dr Ruth Casey
Dr Ruth Casey
Professor Eamonn Maher - head and shoulders
Professor Eamonn Maher

Team leader and consultant endocrinologist, Dr Ruth Casey, who is based in CUH’s department of endocrinology, said:

We are one of a few centres internationally to receive this status so far so it is great news for us, the hospital, and most importantly our patients.

Team leader and CUH consultant endocrinologist, Dr Ruth Casey

“I want to say a massive ‘thank you’ to my colleagues for this team effort and to our patients for the positive feedback which is not only appreciated by us, but noted by those considering our application.”

Co-lead and Professor of Medical Genetics at the University of Cambridge, Eamonn Maher, added:

The University is very proud to be associated with this work and that it has been recognised by the Pheo Para Alliance. The excellence status is a tribute to everyone’s hard work.

Co-lead and university Professor of Medical Genetics, Eamonn Maher

Pheo Para Alliance board member and patient, Eli Soto, added:

Connecting patients to the exceptional team at Addenbrooke’s will provide them with hope and comfort they need during their pheo para journey.

Pheo Para Alliance board member and patient, Eli Soto

For more information on the American-based Pheo Para Alliance follow this link https://pheopara.org/about/the-alliance.

Notes to Editors: The award came after the team applied for the status and underwent a comprehensive three-step process involving an application, interview, and patient feedback, which was gained via websites and advocacy groups.