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Mosaic brings people together with different perspectives to design and conduct medical research. Mosaic uses crowdsourcing to develop research studies with input from patients and their families, disease advocates, researchers and healthcare providers.

Medical research is stronger when all voices are heard and valued.


Current Discussions

We want to hear from you!

Ann Chang's picture

Thank you so much for your participation in HEROIC Mosaic Research Community! It is inspiring to see great discussions among caregivers, researchers, and the AliveAndKickn community. Although we are off to a great start, we really want to hear more from the community. Please click here to go directly to the discussion and be sure to click on “Follow” to get updates on the conversation. We look forward to hearing what is important to you.

Next Step: Transform YOUR Ideas into Research Projects!

Sharon Terry's picture

Thank you so much for your participation in PXE LAB! We are thrilled to see such a great response from caregivers, families, researchers, and the PXE community. Some common themes came up about nutrition and exercise. The next step is turning these questions into actual research studies!

Click on a banner to learn more!

Leg Pain Study

Veggie/Vegan Study

Long-term Follow-up Study

Progress update: next step ready for your input!

Ann Chang's picture

Thank you so much for your support of this Joubert Syndrome research project! We have been working on doing the data analysis and getting results to you as soon as possible. We want to make sure that we are on target with how we will present the results so that it is clear and covers the most important topics for you. Please view and comment on the detailed progress update of this project. We welcome all comments and ideas.