Rare tumour team wins world class status

Pheo Para Alliance PPA_COE-Program_Badge

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.

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.

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

“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.”

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.”

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


Cambridge University Hospitals is one of the largest and best known trusts in the country. As the local hospital for our community we deliver care through Addenbrooke’s and the Rosie hospitals.

Cambridge University Hospitals NHS Foundation Trust