Champion Changemakers: Rare Disease

Hosted by Champion Health Agency

28 February 2022
National, Australia


This Rare Disease Day (28 Feb 2022), join women from three countries creating change in the world of Rare Disease as they share their lived experience. From a double heart and lung transplant in a different country during COVID-19 to spending 9 years in search of a diagnosis to explain intermittent full-body paralysis – these gripping stories are more rare than the diagnosis itself.

The event will be hosted by Champion Health Agency founder, Anja Christoffersen, who lives with a rare disease herself – VACTERL Association – a condition from birth that deformed most of her internal body systems.

Beginning at 5:30pm AEST / 6:30pm AEDT over Zoom (online), you will hear from:

Mele Tau’ese – Eisenmenger Syndrome – Auckland, New Zealand

Libby Lake – Ocular Albinism – Melbourne, Victoria, Australia

Megan Hackwood – Functional Neurological Disorder – Gold Coast, Queensland, Australia

Tayla Richardson – Congenital Myasthenic Syndrome – Melbourne, Victoria, Australia

Eliza Bell – Danon Disease – Cornwall, England

Each person will share their story for 10 minutes followed by 5 minutes where you can ask any questions.

Please register to attend through Eventbrite –