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Download: Clinical practice recommendations for the diagnosis and management of X-linked hypophosphataemia

These clinical practice recommendations (Published: 08 May 2019) are endorsed by the European Society for Paediatric Nephrology (ESPN), the European Society for Paediatric Endocrinology (ESPE), the European Society of Endocrinology (ESE), the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the European Reference Network on Rare Bone Disorders (BOND), the International Osteoporosis Foundation (IOF) Skeletal Rare Diseases Working Group, the European Calcified Tissue Society (ECTS), the European Paediatric Orthopaedic Society (EPOS) study group on Metabolic and Genetic Bone Disorders, the European Society of Craniofacial Surgery, the European Society for Paediatric Neurosurgery and the European Federation of Periodontology (EFP) and will be revised and endorsed periodically.

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Paediatric Care

A specialist doctor who knows and understands the challenges posed by XLH can play an important role in your child’s care. He or she will be able to help you get the treatment and the support they need.
The hospitals found here have specialist endocrinologist paediatricians who have experience in treating children with XLH. Click on your nearest city to find their address. All referrals must be made at the request of your GP.
  • Bristol
  • Birmingham
  • Sheffield
  • Manchester
  • Leeds
  • Liverpool
  • London
  • Oxford
  • Dublin
  • Edinburgh
  • Glasgow
  • Belfast
Bristol Royal Hospital for Children
Paediatric Endocronology, Level 6 Education Centre, Upper Maudlin St, Bristol. BS2 8BJ
Birmingham Children's Hospital
Steelhouse Lane, Birmingham. B4 6NH
Sheffield Children’s NHS Foundation Trust
Metabolic Bone Disease Team, 3 Northumberland Road, Western Bank. S10 2TH
Royal Manchester Children's Hospital
Metabolic Bone Disease Team, Oxford Road, Manchester. M13 9LW
Leeds Teaching Hospitals NHS Trust
Paediatric Endocrinology Team. A Floor, Old Site, Leeds General Infirmary Leeds, LS1 3EX
Alder Hey Children's Hospital
Endocrine Department, Eaton Road, Liverpool, L12 2AP
Evelina London Children's Hospital
Westminster Bridge Rd, Lambeth, London SE1 7EH
Royal National Orthopaedic Hospital
Brockley Hill, Stanmore, Middlesex HA7 4LP
Oxford Children's Hospital
John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU
Children's University Hospital
Temple Street, Rotunda, Dublin 1, D01 XD99, Ireland
Royal Hospital for Sick Children
9 Sciennes Road, Edinburgh EH9 1LF. Scotland
Royal Hospital for Children
1345 Govan Roadd, Glasgow. G51 4TF. Scotland
Royal Belfast Hospital for Sick Children
Consultant Paediatric Endocrine, Growth and Diabetes. 274 Grosvenor Rd, Belfast BT12 6BA

Adult Care

A specialist endocrinologist or rheumatologist who knows and understands the challenges posed by XLH in adulthood can play an important role in your care. He or she will be able to help you get the treatment and the support you need.
The hospitals found here have specialist endocrinologists or rheumatologists who have experience in treating adults with XLH. Click on your nearest city to find their address. All referrals must be made at the request of your GP.
  • Bristol
  • Birmingham
  • Sheffield
  • Manchester
  • Leeds
  • London
  • Oxford
  • Dublin
  • Edinburgh
  • Cambridge
  • Belfast
University Hospitals Bristol
Rheumatology Department B504, Level 5 King Edward Building, Bristol Royal Infirmary, BS2 8HW
University Hospitals Birmingham NHS Foundation Trust
Queen Elizabeth Hospital, Queen Elizabeth Medical Centre Birmingham B15 2TH
Northern General Hospital
Metabolic Bone Centre, Sorby Wing, Northern General Hospital
Central Manchester University Hospitals NHS Foundation Trust
Metabolic Bone Disease Team
Leeds Teaching Hospitals NHS Trust
Royal National Orthopaedic Hospital
Brockley Hill, Stanmore, Middlesex HA7 4LP
Nuffield Orthopaedic Centre
Windmill Road, Headington, Oxford OX3 9DU
University of Edinburgh Western General Hospital
Rheumatic Diseases Unit, Western General Hospital, Edinburgh, EH4 2XU UK
Addenbrooke's Hospital, Cambridge University
Hills Rd, Cambridge CB2 0QQ

Dentistry

Download: The dental aspects of x-linked hypophosphataemia

The information for patients here has been developed in collaboration with: Professor Catherine Chaussain, Dr Martin Biosse Duplan, and Dr Frederic Courson.

View our page on the dental manifestations of those with XLH