XLH Australia Incorporated

Patient support group

 

XLH Australia Incorporated was established in 2018. We are a patient support and advocacy group for people living with X-Linked Hypophosphatemia (XLH). Our mission is to promote XLH awareness and education for affected families, carers, medical professionals, and wider Australian community.

Who we are

XLH Australia; patient support group
XLH Australia Incorporated

XLH Australia Inc has about 200 members. We promote community awareness of XLH and provide support, education and information for affected families and medical professionals.

The patient 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

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, improving standards of care and 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, and with clinicians and also researchers.

Watch the below video for a short explanation of XLH and its impact on the body.