Who are we

XLH UK are a charitable trust, 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.

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.

Connect with our community

Join our private Facebook network to connect with families alike

Get to know us

Our team
Oliver Gardiner

Trustee

Nick Papé

Trustee

Amy Lee

Trustee

Anne Papé

Volunteer

Sally Hatton

Volunteer

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 friends

Our position on working with the pharmaceutical sector can be found here.