Patient support group
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
NEWS UPDATE: On 13 August 2020 the Australian Minister for Health, The Hon Greg Hunt MP, the Committee called for an inquiry into, and report on, approval processes for new drugs and novel medical technologies in Australia. XLH Australia was proud to make a submission to this inquiry. Submissions have now closed, to view the submissions on the website. Due