Patient support group
The 2023 World Rare Disease Day is on 28 February. The event is a globally-coordinated movement on rare diseases, working toward equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. At XLH Australia, we’re advocating for the best care standards for everyone the XLH community. This means a care team that
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
We’re keeping our fingers crossed for a new treatment for X-linked hypophosphatemia (XLH) that is being considered by the Pharmaceutical Benefits Advisory Committee (PBAC) in March 2022. The PBAC has opened its consumer comments portal so we’re encouraging all members of our XLH community to share their story. Fingers crossed!
The Standing Committee on Health, Aged Care and Sport has recently tabled its report in the Australian Parliament – The New Frontier: Delivering better health to all Australians. XLH Australia is a strong advocate for the patient voice and we are working toward better access to new medications for all Australians. We were delighted to provide a witness statement as
Each year on 3 December we celebrate International Day of People with Disability (IDPwD). IDPwD is a United Nations observed day aimed at increasing public awareness, understanding and acceptance of people with disability. It’s also a time to celebrate the contributions and achievements of people with disability and promote inclusion within the community including workplaces. XLH is a debilitating rare
Accessing your best care: To celebrate International XLH Day on 23 October 2021, the International XLH Alliance delivered a campaign focusing on what it means to access your best care. The campaign shared patience stories from across the world and shared some tips for members of the XLH community to ensure they are receiving the best care possible for them
XLH Awareness Day was 23 June 2021. This year, we were fortunate enough to be able to host a morning tea with the Parliamentary Friends of Medicines in Canberra. Dr Tony Lafferty and Dr Peter Simm provided an overview of the clinical diagnosis of XLH and the burden of the disease. In addition, our President, Sandy, shared her story while