The Aurelian Project
A rare disease can be defined as one that affects less than five in 10,000 people. In Australia, around 8% of the population, which translates to roughly 2,000,000 people, live with a rare disease. Rare diseases are debilitating and can cause serious negative implications for those afflicted by them, including death. Since 80% of rare diseases are genetic, studies have shown that one-half of all rare diseases affect children. The great complexity and unmet need in rare diseases can be overwhelming for the entire sector: for policymakers, clinicians, practitioners, researchers, academics, industry and especially for people who live with rare diseases.
The Survey seeks to collect data on the ongoing health and psycho-social challenges of rare diseases on children and their families. In particular, the journey to diagnosis, hospital support, NDIS support, community organisation supports, and family and friends. The project is being undertaken by three master’s students from the Queensland University of Technolology. The data collected will be used by stakeholders to advocate for better funding and provide cohesive and tailored support systems for families who have a child diagnosed with a rare disease. The data will be used to provide input on how Jack’s Butterflies can better support rare disease families.
What is Your Story?
The survey will provide insight to:
Journey to Diagnosis:
Insights into:
- How a confirmed diagnosis affects families daily and future life
- Support services needed to help with the emotional, financial and social impacts that may improve the diagnostic journey for others
NDIS Support:
Insights into:
- Level of community understanding and barriers encountered when seeking support soon after diagnosis
- General awareness of what is available through the NDIS
- Challenges faced during the NDIS application process and areas for the improvement and additionally supports needed within the NDIS.
- Age at which children receive NDIS and your perceptions of its timeliness will aid in streamlining processes
Hospital Support:
Insights into:
- The level of support provided by the hospital during your child’s rare disease journey, helping identify areas of strengths and needs for improvement
- Identify gaps in the support systems during hospitalisation
Community and Organisation:
Insights into:
- Your experience in the level of supports offered for children with rare diseases
- The gaps in community organisations for stakeholders to advocate for better funding to create a more cohesive and tailored support system that positively impacts the lives of the families dealing with rare diseases
Family and Friends:
Insights into:
- Community based medical and health services for children with rare diseases
