Resources for patients

View our page on the dental manifestations of those with XLH. The information for patients here has been developed in collaboration with: Professor Catherine Chaussain, Dr Martin Biosse Duplan, and Dr Frederic Courson.

Resources for HCP's

If you are a healthcare professional who is interested in learning more about XLH UK, or wants to get involved or you would like your contact details on saved on our database, please let us know by clicking the above button.

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
  • Newcastle
  • Southampton
  • Cardiff
  • Nottingham
Bristol University Hospital NHS Foundation Trust
Paul O’Gorman Building, Upper Maudlin Street, Bristol BS2 8BJ
Birmingham Children’s Hospital NHS Foundation Trust
Steelhouse Lane, Birmingham. B4 6NH
Sheffield Children’s NHS Foundation Trust
Metabolic Bone Disease Team, 3 Northumberland Road, Western Bank. S10 2TH
Manchester University NHS Foundation Trust
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 NHS Foundation Trust
Endocrine Department, Eaton Road, Liverpool, L12 2AP
Evelina Children’s Hospital Guy’s and St Thomas’ NHS Foundation Trust
Westminster Bridge Rd, Lambeth, London SE1 7EH
Royal National Orthopaedic Hospital NHS Trust
Brockley Hill, Stanmore, Middlesex HA7 4LP
Great Ormond Street Hospital for Children NHS Foundation Trust
Great Ormond St, London WC1N 3JH
Oxford Children's Hospital, Oxford University Hospitals. NHS Foundation Trust
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
Newcastle upon Tyne Hospitals NHS Foundation Trust
Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne NE1 4LP
University Hospitals Southampton NHS Foundation Trust
Southampton Children’s Hospital, Southampton General Hospital, Tremona Road, Southampton SO16 6YD
Noah’s Ark Children’s Hospital for Wales University Hospital of Wales
Heath Park Way Cardiff CF14 4XW
Nottingham Children’s Hospital
Queen’s Medical Centre, Derby Rd, Nottingham NG7 2UH

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 NHS Trust
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

Further reading

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.

Download Link

Download: Proposed framework on a networked service model for care of adults with rare bone conditions

To recognise Rare Disease Day 2023, we are delighted to share with you the attached Proposed framework on a networked service model for care of adults with rare bone conditions and an accompanying infographic which demonstrates, in a more visual way, some of the recommendations stakeholders agreed on.

Adults with Rare Bone Conditions deserve access to high quality care. I am pleased to support a care framework, developed by clinicians and patient groups, and funded by Kyowa Kirin, that provides recommendations on how to improve this care.

Download Proposed Framework on a networked service model for care of adults with rare bone conditions

Framework Infographic