Rhiannon Cramer – CSNK2A1 Foundation

Reflections From an OCNDS Parent on Their Family’s Journey to Diagnosis

September 13, 2018September 22, 2018Jennifer Sills1 Comment

By Rhiannon Cramer I wanted to take a moment to say how thankful I am for the OCNDS community and to tell a little of our story and journey. Our daughter’s problems were evident by the second week of her life. This turned our lives into a journey that has been a long difficult...

Spotlight on Rhiannon Cramer

February 28, 2018September 14, 2018Jennifer SillsLeave a comment

Rhiannon Cramer is the head liaison for the closed OCNDS Facebook group. She created the Facebook group in 2016 to help families connect after her daughter, Cordelia, was diagnosed with OCNDS. Cordelia was the one of original five children identified in the first published research paper describing OCNDS. We are grateful to Rhiannon for...

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...