Patient support group
The 2022 International XLH Awareness Campaign is Access Your Best Care. This follows the development of the Clinical practice recommendations for the diagnosis and management of X-linked hypophosphataemia guidance in 2019. This guidance is critical in the care and management of those with XLH. This inspired us to extrapolate 12 key recommendations from the guidance in an effort to make them
A new XLH treatment will soon be available for Australian children and adults. On the eve of International XLH Awareness Day (23 October), this is the news Australia’s XLH community has been waiting for. From 1 November, CRYSVITA® (burosumab) will be subsidised through the Pharmaceutical Benefits Scheme (PBS)3 for Australian children and adults living with a disease, known as X-linked
On 17 September 2022, we attended the 2nd Asia Pacific XLH Patient Meeting. The virtual meeting included members of rare disease organisations such as XLH Australia, Rare Disorders Society Singapore, Malaysian Rare Disorders Society, Thai Rare Disease Foundation, XLH India, Illness Challenge Foundation China, Rare Disease Hong Kong Limited, Taiwan Foundation for Rare Disorders and the International XLH Alliance, as
In the lead up to Rare Disease Day (28 Feb), XLH Australia conducted a patient/carer survey about living with XLH. This is the first Australian XLH patient/care survey, and the results are now in. There are some fascinating insights. Click on the below to view a snapshot of these results. You can see the full survey results here. We also