Natural History Study – CSNK2A1 Foundation

Call to Action! Sign up for the CSNK2A1 Natural History Study

March 12, 2020March 13, 2020Jennifer SillsLeave a comment

Each genetic variant is important! In order to be represented in research, you must participate in research! Answer the call to action and sign up for the CSNK2A1 natural history study. We highly encourage our community to register with Simons Searchlight to participate in the Simons Searchlight long-term natural history study. By participating...

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...

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...