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  • 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 four master's students from the Queensland University of Technology. 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
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  • CONFIDENTIALITY/PRIVACY POLICY FOR AURENLIAN PROJECT 
    The Aurelian Project is committed to protecting the privacy and confidentiality of all survey participants. We appreciate your contribution to the survey to enhance support for children with rare diseases and their families. 
    This privacy policy outlines how we collect, use, store and protect your personal information during and after your participation in the survey. We collect voluntary data, including name, email, and responses, for research purposes only.  
    Data Retention 
    Your personal information will be retained for the survey's duration and securely deleted after the project's end date, while transcripts will be preserved. We, as social workers, aim to foster supportive conversations and provide face-to-face interactions while respecting your privacy. 
    Data Security 
    All data, whether online or paper-based, is securely stored. Your individual answers remain confidential and used in an aggregated and anonymised format for analysis. Security measures safeguard against unauthorized access or disclosure.  
    Personal details are privately discussed with internal supervisors without names included. 
    Participation implies consent to data collection and storage. Consent can be withdrawn at any time, upon request. We do not sell or disclose personal data to third parties without permission. You have the right to access and correct your information.  
    Policy Update 
    This privacy policy may be updated from time to time to reflect changes in our data collection and usage practices. Any revisions will be promptly communicated on our website. 
    If you have any queries or complaints about our Privacy Policy, please contact us at: 
    PO Box 3066, Chermside West QLD 4032 
    admin@Jacksbutterflies.org.au 
    (07) 3359 9004 

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