Registered Charity
About us
Who we are
XLH UK is the only registered charity which supports those with X-linked hypophosphataemia (XLH) in the UK. Our mission is to help those with XLH and their families through research, support and advocacy. We are here to listen, to inform and represent the patient community.
We are a small charity for a rare condition with a big heart!
Our culture and values
The charity was set up by volunteer trustees with lived experience of XLH. XLH is a rare metabolic condition with complex effects on bones, teeth and energy levels, which are not well understood by the medical community.
We represent and connect the patient community; improving awareness, information and treatment options. Our values – accountability, integrity and transparency – underpin everything we do.
Equality, diversity and inclusion policy
XLH UK recognises the importance of diversity, equity, and inclusion for the long-term success of our organisation. We are committed to creating an inclusive, open and respectful culture comprised of individuals from diverse backgrounds where we advocate for and advance opportunities for everyone.
