COVID19 Journals: The lived experience of the Genetic, Undiagnosed and Rare Disease Community

A collaborative research project between Australian Genomics,
Murdoch Children’s Research Institute (MCRI)
& Genetic Support Network of Victoria (GSNV)

  • Do you have a Genetic, Undiagnosed or Rare Disease?
  • Do you care for someone with a Genetic, Undiagnosed or Rare Disease?
  • Are you part of a Support Group for people with a Genetic, Undiagnosed or Rare Disease and their carers?

If you answered yes to any of these questions, we would like to hear from
you. As we shift our lives to accommodate for the restrictions placed on us due to Covid-19 people are responding in different ways ranging from concern & inaction to creatively developing workarounds as best we can.

We are looking for people, over 18 years old, to keep a journal of their
thoughts & experiences over the next year as we look forward to coming
out of the other side of this pandemic

We will contact you once a month for the next year to ask you to share any
journal extracts you are happy to send over . All documents will be stored
securely in password protected computers & anonymised.

If you would like to know more please contact:
Ph: (03) 8341 6315
Dr. Stephanie Best, Senior Research Fellow, Murdoch Children’s Research Institute
Monica Ferrie, Chief Executive Officer, Genetic Support Network of Victoria