Tag: xlh

XLH Australia: Celebrating the Real Heroes of National Carers Week

by neford123

National Carers Week is here—and at XLH Australia, we’re rolling out the blue carpet for the unsung heroes who make our community strong: the carers. Why XLH Carers Deserve the Spotlight Imagine juggling medical appointments, advocating for rare disease awareness, and being the emotional anchor for someone living with XLH—all while managing your own life. … Continue reading XLH Australia: Celebrating the Real Heroes of National Carers Week

XLHA walking beside you in the lead up to World Mental Health Day

by neford123

Let’s be honest: mental health isn’t just a buzzword or a box to tick once a year. It’s something we all wrestle with—sometimes quietly, sometimes out loud. In the lead up to World Mental Health Day, XLHA wanted you to know: you’re not alone, and your story matters. Why This Matters—To All of Us If … Continue reading XLHA walking beside you in the lead up to World Mental Health Day

XLH Awareness Day–23 June 2021

by neford123

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, … Continue reading XLH Awareness Day–23 June 2021

Inquiry into approval processes for new drugs and novel medical technologies in Australia

by neford123

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 … Continue reading Inquiry into approval processes for new drugs and novel medical technologies in Australia