Over the last year, people in the Genetic, Undiagnosed and Rare Disease community across Australia have been sending in journals each month to record their day to day lives. Some of the journal submissions have centred on the impact of COVID-19 but many others have explored coping strategies that will influence their lives way beyond this pandemic. This initial project has helped us to understand the lives of people with a Genetic, Undiagnosed and Rare Disease, and their carers. We now have an opportunity to take the next step and identify practical interventions that make could make a tangible difference to their quality of life and for their families.
Using the findings from the journaling study, our aims are:
• Identify barriers and practical interventions that could make a difference to the quality of life of the Genetic, Undiagnosed and Rare Disease community
• Prioritise the practical interventions identified
This study plans to take a positive approach to gathering community priorities for action. Data gathered through this study will help to ensure that future advocacy work undertaken for this population is centred on their experiences and priorities.
2. Who is running the research project?
This project is being led by Dr Stephanie Best, a senior research fellow at the Murdoch Childrens Research Institute with Australian Genomics and Monica Ferrie, CEO Genetic Support Network Victoria (GSNV). We are supported by a team from the GSNV.
3. Can I take part?
Anyone, over the age of 18 years, with a Genetic, Undiagnosed or Rare Disease, their carers or support groups can take part in this study.
4. What do I need to do in this project?
Taking part in this project will involve taking part in one online focus group. The focus group will take up to 1.5 hours and have five or six people attending. We will discuss ideas from the journals about practical interventions that could make a difference to day to day life (e.g., accessing peer support or getting consistent health information).
You can register your interest here
If you would like more information about the project, please contact:
Project Assistant | Genetic Support Network of Victoria (GSNV)
• Phone: +61 421 259 635
• Email: GSNVResearch@mcri.edu.au