Lived Experience Series 2019

Apr, 2020 | Videos

Lived Experience Series 2019

Rare & Undiagnosed disease

Courtesy & thanks to GSNV, and the individuals and families who contributed

Here are several stories about rare and undiagnosed disease put together by Genetic Services Network Victoria.  While they share commonality across the spectrum of rare and undiagnosed disease, 3 stories are from 3 different Leukodystrophy perspectives:

Founder of Leukodystrophy Australia, and late onset diagnosed person: Sr Julie Thomas OAM

Brothers, early onset diagnosed: Victor and Max McDonnell

Office Manager: Bronwyn Byrne

The parents and individuals who share their photos, videos and stories inspire us; they help us feel less alone on this journey.  If you’ve got something you wish to share please get in touch – we have a whole country of people who would love to hear from you.  Heartfelt thanks for your share.

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