Rare Disease Events
Following is a list of events celebrating XLH and other rare disease events. If you have a rare disease event you’d like to highlight, you can submit it below.
28 February–World Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective of rare disease day is to raise awareness in the general public and decision-makers about rare diseases and their impact on patients’ lives.
Visit www.rarediseaseday.org for more information.
18 March 2023–Mental health 101 webinar
23 June–XLH Awareness Day
In 2021, XLH Australia presented to the Parliamentary Friends of Medicines at Parliament House, Canberra. This provided a wonderful opportunity to raise awareness of XLH. Maria Vamvakinou MP also made a statement in Parliament to commemorate the day. You can watch a recording here or read the transcript in Hansard.
23 October–International XLH Awareness Day
To celebrate the 2021 International XLH Awareness Day, we hosted a virtual seminar for patients, carers and medical practitioners. We also launched our new short video explaining X-linked Hypophosphatemia in simple terms. Click here to listen to are recording of the seminar featuring clinical experts and patient stories to learn more about X-Linked Hypophosphatemia.
If you have an event you’d like us to highlight, you can submit your event by completing the below form: