Mon, 28 Feb

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Online Event - Zoom

Champion Changemakers: Rare Disease

5 incredible women share their stories with life-altering rare diagnoses you may have never even heard of.

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Champion Changemakers: Rare Disease

Time & Location

28 Feb, 5:30 pm – 7:00 pm AEST

Online Event - Zoom

About the event

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
  • Liz Hile - Bilary Atresia - Toowoomba, 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.

Rare disease may affect 300 million worldwide, however the complexity, diversity and uniqueness of different diagnoses can mean many become isolated and unable to connect with adequate supports or community. Join us in raising awareness and generating change for the people worldwide living with a rare disease, their families and carers.

Please let the event organisers know if you have any accessibility requirements to attend this event. If you have any further questions, please email Anja - anja@championhealthagency.com

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