A new patient-led drug discovery community aims to study a rare neurodevelopmental disorder called Aicardi-Goutières syndrome (AGS) and support the development of therapeutic treatments for this devastating disease.
My work at Luna is personal because I’ve seen the power of communities connected by, through, and for research, with amazing results. The Luna platform empowers communities to digitally mobilize, gather their health data, develop solutions to their questions, and partner with industry and researchers to find answers.
We've been hearing about patient-centered research for years. Yet while those of us in the industry have long been immersed in creating participant-centered research, the concept is still not mainstream. But that might be changing in 2022.
We believe medical studies should be done in a truly collaborative way, where people living with the disease are treated as the experts, and researchers study the information streams that reflect the true lived experiences of the families. Advocacy organizations—the National MPS Society and Genetic Alliance—partnered with Luna to achieve…
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