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 – https://www.eventbrite.com.au/e/champion-changemakers-rare-disease-tickets-252511818647