XLH

The new XLH International Guidelines: sharing patients’ and experts’ perspectives. 

Supported by an unrestricted educational grant of Kyowa Kirin.

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Join IFMRS on Wednesday, 29 October, for a free virtual workshop on the new X-Linked Hypophosphataemia (XLH) international guidelines. Hear from leading experts and the XLH community on diagnosing, evaluating, managing, and monitoring XLH, with an emphasis on multidisciplinary care and current treatment options, including burosumab.

The session will look back at the journey so far in XLH and discuss the new guidelines from adult and paediatric viewpoints, with time for Q&A.

Speakers: Prof Thomas Carpenter (Yale University), Prof Leanne Ward (University of Ottawa), Prof Suzanne Jan De Beur (University of Virginia), Tenna Toft Sylvester (International XLH Alliance).
Co-chairs: Martine Cohen-Solal (ECTS President-elect) and Dr Adalbert Raimann (XLH expert).

Free, registration required (click).

What is XLH? 

Symptoms: Reduced bone mineralisation and skeletal deformities.

Causes: Variants in the PHEX gene leading to increased FGF23 activity and phosphate wasting.

New guidelines focus on: diagnosing • evaluating • managing • monitoring.

Care model: Strong emphasis on multidisciplinary care (including endocrinologists and dentists).

Therapy note: Information on treatment with burosumab, where appropriate.

See references below.

1. https://pubmed.ncbi.nlm.nih.gov/39960858/

2. https://academic.oup.com/jcem/article/110/8/2353/8115450

3. https://www.nature.com/articles/s41581-024-00926-x