What we do

a) Supporting research for the public benefit into the causes, prevention, diagnosis and methods of treatment of X-Linked Hypophosphatemia and related disorders and publishing the useful results of that research;

b) provision of a support network for families suffering from the effects of X-Linked Hypophosphatemia and related disorders;

c) advocating early diagnosis and well-managed treatment of X-Linked Hypophosphatemia and related disorders.

How we started

XLH UK was founded on November 18th 2017. The trust was formed by Oliver Gardiner, Nicholas Papé and Amy Lee.

The mission of XLH UK is to promote XLH and related disorders, awareness and education for affected families, medical professionals, and the community at-large within the UK; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families within the UK so they can understand and cope with the complications of the disease; and to foster the search for a cure.

Connect with our community

Join our private Facebook group to connect with families alike

Get to know us

Our team
Oliver Gardiner

Trustee

Sarah Mitson

Chair, Trustee

Sally Hatton

Trustee

Luke Paul

Volunteer

Our Medical Advisory Board
Kassim Javaid

ASSOCIATE PROFESSOR Nuffield Department of Orthopaedics, Oxford University

Ian Tucker

Paediatric Endocrine (Bone) Clinical Nurse Specialist Bristol Royal Hospital for Children

Moira Cheung

PAEDIATRICIAN Department of Paediatrics Guy's and St Thomas' NHS Foundation Trust London

Our Partners

Rare disease initiatives and organisations that we collaborate with.
Our position on working with the pharmaceutical sector can be found here.