The GUARD Collaborative Australia represents the peak genetic, rare and undiagnosed disease organisations. Together they represent over 100 genetic peer support groups. GUARD is a collaboration between:
– Genetic and Rare Disease Network: gardn.org.au
– Genetic Support Network Victoria: gsnv.org.au
– Genetic Alliance Australia: geneticalliance.org.au
– Syndromes Without A Name (SWAN) Australia: swanaus.org.au
The Genetic Undiagnosed and Rare Disease (GUARD) Collaborative Australia released a survey to the rare disease community in March 2020 to gain insight into the effect COVID 19 had on families living with these conditions. Thanks to everyone who participated in the survey. We know that more than half of these people believed they were at increased risk of COVID 19 because of their condition. The majority of people were worried about COVID and considered COVID had impacted them. The infographic below provides some of the key findings. GUARD will be using this information in our ongoing communication about the experiences and challenges people with genetic undiagnosed and rare conditions face in the COVID 19 environment.