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President, Jennifer Sills profiled by Global Genes

October 23, 2020October 23, 2020Jennifer SillsLeave a comment

We are a proud member of the Global Genes Foundation Alliance. Global Genes’ mission is to connect, empower and inspire the rare disease community. As an Alliance Foundation, we have the opportunity to collaborate and exchange best practices with other rare disease organizations to drive better outcomes for the rare disease community. Global Genes...

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We are excited to launch our Parent Education Webinar Series

October 9, 2020October 9, 2020Jennifer SillsLeave a comment

We are excited to launch our Parent Education Webinar Series. As parents and patients try to navigate a new diagnosis, they can be overwhelmed with information. We want to provide informational videos to help parents and patients navigate their rare diagnosis and inform them about different types of interventions available. Our first webinar is...

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CSNK2A1 Foundation

We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.

We are a 501(c)(3) non-profit organization. EIN #82-4220939.

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