Editor’s Choice: The 2021 Patient Worthy Reader Survey

Happy Friday!

This week, we’d like to get to know more about you! Fill out the 2021 Patient Worthy Reader’s Survey and let us know the reasons you come to Patient Worthy for rare disease coverage, and the ways in which we can improve. We also have details on a new $2.25M grant allocated for the study of Alport syndrome and the importance of being a patient peer in the ADPKD community.


The 2021 Patient Worthy Reader Survey

We appreciate you taking the time to fill out this short survey and letting your voice be heard.


A Five Year $2.25M Grant Has Been Awarded for the Study of Alport Syndrome

The grant funds projects that are supported by robust early data and have the potential to advance the field of research significantly.


How to Be a Patient Peer: Providing Resources for People with ADPKD

“My wish is that through hearing patient stories and learning about slowing the progression, others might take an active role in their health journey through early detection of ADPKD and making healthy choices.”


Do you have a rare disease experience of your own? Share with us here.

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