The current environment of COVID-19 is changing the way we live our lives. In this extraordinary time, there are lessons being learnt, expectations changing, and boundaries being pushed, broken and recreated including in our well-being, socialising and healthcare. 

In a new study, researchers from Australian Genomics, Murdoch Children’s Research Institute and the Genetic Support Network of Victoria would like to hear from those in the Genetic, Undiagnosed and Rare Disease Community about the impacts of the COVID-19 pandemic on their well-being, access to healthcare, and peer support. 

The COVID-19 journal study is asking the community to share these experiences through monthly journal entries over the next year. ‘Journal’ entries can take any form: these might be illustrations, written entries, videos, or voice-recorded entries, photographs, social media posts, poems or artworks. Any form that helps capture your ongoing experience!

The study is being run by Dr. Stephanie Best (Australian Genomics and the Murdoch Children’s Research Institute) and Monica Ferrie of the Genetic Support Network of Victoria (GSNV).

These journal entries will help us capture and understand how the rapidly changing COVID-19 environment is impacting the Genetic, Undiagnosed and Rare Disease Community,” said Stephanie.

By doing so, we can better identify and advocate for changes that we would like to see continue into post COVID-19 healthcare and peer support settings to ensure the community are well supported into the future.”

How to take part

Anyone over the age of 18 years, with a Genetic, Undiagnosed, or Rare Disease, as well as carers, or members of advocacy and support groups can take part in this study. Once a month participants will be invited to email these entries they are happy to share, to the researchers. All entries will be stored securely in password protected computers and anonymised.

To express your interest in participating, please register for the study here before June 30. Researchers will then be in contact with further details.

Or email the research team directly at C19Journals@mcri.edu.au  or ph: (03) 8341 6315. More information available on the GSNV website here.