film – CSNK2A1 Foundation

Reflections on the rare disease film “Good Days, Bad Days, Rare Days”

February 28, 2020February 28, 2020Jennifer SillsLeave a comment

I had the honor and privilege of interviewing most of the families that were in Good Days, Bad Days, Rare Days. I was so grateful to Bo Bigelow and Daniel DeFabio, the Co-Founders of Disorder: The Rare Disease Film Festival, for the opportunity to speak with these extraordinary, rare warriors. Even though our rare...

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...