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ERBoN - East Anglian Rare Bone Disease Network

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ERBoN is the East Anglian Rare Bone Disease Network.

We are a multidisciplinary group of colleagues from across specialties involved in providing clinical services for those with rare bone diseases including rheumatologists, endocrinologists, geneticists, clinical chemists, paediatricians, and others

The network is led out of Addenbrooke's hospital (Gavin Clunie, rheumatology) and Norfolk and Norwich (Jeremy Turner, endocrinology).

We aim to provide a supportive, safe and expert environment in which colleagues involved in the care of patients with complex osteoporosis, osteogenesis imperfect, skeletal dysplasias, metabolic bone disorders and a wide range of other rare and challenging bone disease can share expertise, discuss complex diagnostic and therapeutic challenges and cross refer patients within the region.

We are affiliated to the national rare bone disease network. We meet on a monthly basis in an MDT format for case based discussions, run an annual in person educational and training meeting, publish a news letter and provide an informal network of colleagues with complimentary and overlapping expertise and interests for mutual professional support.

Meet the team

Dr Gavin Clunie - Consultant rheumatologist and metabolic bone physician and joint clinical lead ERBoN (Cambridge)

Professor Jeremy Turner - Consultant endocrinologist, department of diabetes and endocrinology, NNUH
Honorary professor, Norwich Medical School
Clinical director, NIHR CRN East of England
Joint clinical lead ERBoN (Norfolk and Norwich)

Jolanta Mil - ERBoN clinical specialist nurse

Louise Clare - ERBoN network coordinator

Paget's Association

We are a Paget’s Association Centre of Excellence. The Paget's website (opens in a new tab) provides patients with lots of information on Paget’s disease for anyone newly diagnosed and links to support resources and booklets which we hope patients will find helpful.

MDT

Our ERBoN MDT runs on the second Monday of every month over teams. Please contact ERBoN Network Coordinator, Louise Clare, via email or telephone (01223 217716) if you wish to submit a case for discussion.

We do ask that you are available to present your case at the meeting.