Rare As One Network Impact Report
The Glut1 Deficiency Foundation was honored and deeply grateful to have been chosen as one of the 30 patient advocacy organizations to be a member of the Chan Zuckerberg Initiative Rare As One Network Cycle 1. It has been a transformational experience and a tremendous source of knowledge, support, and opportunity over these last few years.
We’ve received training, mentoring, funding, tools, and resources to become the driving force for patient led research and build a collaborative research network to focus on asking and answering the most important questions to make progress in ways that matter most to patients.
We’ve learned and grown and forged new relationships with like-minded organizations who are working hard to help patients in their communities, too. Even though the grant period has ended, we continue to benefit from the experience daily and are working hard to build on the good things that came from this capacity building opportunity.
CZI has created an impact report for the Rare as One Network Cycle 1, and we believe it illustrates the power of patient organizations to drive progress and create change. We’re honored to be part of it and keep growing along with Rare As One.
Check out the reports below and learn more about this movement to put patients first and let their needs and priorities lead the way.
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