Early Access Programme for Adults with XLH

Early Access Programme (EAP) for adults with X-linked Hypophosphataemia (XLH)

Burosumab is currently only licensed in the UK for XLH patients who are paediatric (over 1 year) or adolescent (with growing skeletons).  Based on available clinical data and advice from leading medical experts, it is believed that there may also be overall benefits for adult XLH patients, and access is available under an EAP for adult XLH patients where appropriate.

This is only where in the opinion of the treating clinician, an individual adult patient has unmet medical need and is likely to derive overall benefit from treatment with burosumab.

Access for an individual adult XLH patient can only be through direct consultation with his / her treating clinician in centres that are specialised in managing rare bone conditions. The clinician will discuss all aspects of the EAP with the patient and may mutually arrive at a decision to progress with the application to enter the EAP.

If you wish to be considered for the adult EAP, or have any queries about this or any other related issues, please speak to your clinician. If your clinician then has any queries, they can contact their local Kyowa Kirin contact or medinfo@kyowakirin.com

If you experience any issues with this process, please can you let us know at contact@metabolicsupportuk.org so that we can support you.