Information for patients living with, and clinicians caring for patients with, X-linked Hypophosphatemia
XLH Australia (XLHA) recently launched its bold vision for 2025. As we look towards the future, XLHA’s commitment to improving the lives of those affected by X-Linked Hypophosphatemia (XLH) remains unwavering. The vision is built on five key pillars: Firstly, XLHA recognises the importance of a seamless transition from paediatric care to adult healthcare. Worldwide … Continue reading XLH Australia’s vision for 2025
XLH Australia Patient EDUCATION Day 2025 – Let’s Connect! When: February 28 & March 1, 2025 Where: Novotel Sunshine Coast Resort, QLD We’re excited to invite you to the XLH Australia Patient Education Day 2025 – a special event for individuals and families impacted by X-linked Hypophosphataemia (XLH)! Please refer to the infographic below for details Why Attend? Connect with others living … Continue reading XLH Australia Patient Education Day 2025
In this episode of our Podcast series, Naomi and Sandy speak with Suzanne, Royce, Angela, Georgia and Eli–three generations, each with unique experiences and perspectives on life with XLH—and life as part of an XLH family! Topics discussed: You can listen to the latest episode on the following platforms:
Episode 2 of our Podcast series, Living with XLH: Parenting a child with a rare disease, is out now! This week, XLH Australia President Sandy Bevc and XLH Australia Vice President Naomi Ford speak with their mothers about their experiences parenting a child with a rare condition. Topics discussed: You can listen on Spotify, Apple … Continue reading New Podcast episode out now
To celebrate International XLH Awareness Day 2024 on 23 October, XLH Australia (https://xlhaustralia.com) is releasing the first of a six-episode podcast series, “Living with XLH”. In our first episode, XLH Australia President Sandy Bevc and Vice President Naomi Ford are joined by a Special Guest, Prakalp Sudhakar, an XLH patient and the founder/chair of XLH … Continue reading Podcast launched for XLH Awareness Day
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 … Continue reading 2023 World Rare Disease Day
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 … Continue reading 2022 International XLH Awareness Day
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 … Continue reading New XLH treatment available from November 2022
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 … Continue reading 2nd Asia Pacific XLH Patient Meeting
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 … Continue reading XLH community has fingers crossed this rare disease day