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.
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.
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.
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.
