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The Parkinson's Journey: Insights from Patient Researcher Sara Riggare

20 Nov 2023

A Personal Journey and Expert Insight into the AI-PROGNOSIS Project's Transformative Impact

Sara Riggare, a patient and researcher living with Parkinson's disease, shares her journey and expertise and brings her unique perspective to the AI-PROGNOSIS project. Sara's insights and experiences offer a deeper understanding of this complex condition and its management. Her active involvement in the AI-PROGNOSIS project is driven by her personal experience with Parkinson's disease and her conviction that the project can contribute to enhancing our understanding of how AI can be applied to improve the lives of those living with this condition.


My name is Sara Riggare, and I am a patient researcher at Uppsala University in Sweden. Being a patient researcher means that I am both a patient and a researcher and use my own experiences from being a patient in my work and research. The AI-PROGNOSIS project is especially interesting for me since the focus of the project is the disease I am living with, namely Parkinson’s disease. I have a PhD from Radboud University in the Netherlands and my PhD thesis was titled ”Personal science in Parkinson’s disease: a patient-led research study” (link to thesis).

I was diagnosed with Parkinson’s disease in 2003, and during the time since then, I have learned a lot. Before my diagnosis, I had no idea of how extremely individual Parkinson’s is, both in terms of symptoms and in terms of treatment. Today I take 5 different prescription medications for my Parkinson’s, in 4 different combinations, in total 7 times every day. Finding this medication regime has taken a lot of effort and discussions with my neurologist. To learn more about medication in Parkinson’s, see the links below:

I am very happy to be involved in AI-PROGNOSIS and am convinced that the project will contribute to improving our understanding for how AI can be used for Parkinson’s disease. However, research and development take time so even if all goes precisely according to plan, the solutions developed during the project will not be generally available to persons living with Parkinson’s for at least 5-10 years. Therefore, I am determined to do what I can for the work done in AI-PROGNOSIS to benefit my fellow persons with Parkinson’s also during the project. This will be done for example by developing educational content, so if you are interested in learning more, follow the project on social media!

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