XLH Australia Incorporated was established in 2018 as a patient support and advocacy group for people living with X-Linked Hypophosphatemia (XLH). XLH Australia’s mission is to promote XLH awareness and education for affected families, carers, medical professionals, and wider Australian community.
Who we are
The X-linked Hypophosphatemia patient support group has about 200 members. We promote community awareness of XLH and provide support, education and information for affected families and medical professionals.
The support group is coordinated by volunteers. We are proud members of the International XLH Alliance and a valued partner of Rare Voices Australia.
What we do
While we want to create awareness of XLH in the general community, we also provide education for affected families, medical professionals, and the community.
XLH Australia Inc provides medical professionals information to diagnose and treat patients with XLH. We also work hard to develop resources for our community to help them understand and cope with complications of the disease.
Together, we are working toward a brighter future for everyone with XLH. We can achieve this by improving standards of care while simultaneously supporting people with the condition and their loved ones.
The information on this website offers information to people across Australia with details about diagnosis, treatment and the very latest research.
XLH Australia’s membership is growing daily. Members have access to a variety of tools to help connect patients with each other, as well as with clinicians and researchers.
Watch the below video for a short explanation of XLH and its impact on the body.