Cystinosis Research | CCI Program

About the project and the involvement opportunity
Our research team is interested in studying a group of rare genetic conditions termed lysosomal storage diseases. These are conditions where the body is unable to break down certain substances within the cell’s waste bins called lysosomes, leading to the accumulation of these components which causes various health problems. One of our projects is looking at the accumulation of the amino acid cyst(e)ine which is seen in cystinosis patients. We have identified a new gene that may be involved in cystinosis and therefore might serve as a new therapeutic target. To guide our research, we are seeking a research buddy with lived experience of cystinosis or a parent/carer of a cystinosis patient. The research buddy will meet with our research team and share their lived experience. We will seek input into proposed project aims and share progress as the research develops.

About the position
We are seeking a Research Buddy to be involved in our research on cystinosis. This position would involve meeting the research team 3-4 times a year and may include additional reading. At these meetings we would seek your input into project ideas and provide updates on research results.

What am I expected to do?
Involvement will include sharing experiences as a cystinosis patient or a parent/carer of a cystinosis patient, providing feedback on proposed research, and reading proposals to ensure they are in plain language and can be understood by the general community.

What skills or experience do I need?
Lived experience with cystinosis or a parent/carer of someone with cystinosis.

How long am I expected to be involved?
12 months initially but we would be happy to continue community involvement if both parties find it beneficial.

Where will meetings be held?
Meetings can be held online or in person at QEII Medical Centre precinct.

What support is offered?
$37.50 per hour honorarium. Training and support is offered by the Consumer and Community Involvement Program.

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