Partnerships

PPP3CA Hope Foundation is proud to partner with the Rare Epilepsy Network (REN) who are improving outcomes of people with rare epilepsies through an innovative collaborative infrastructure that drives urgent, patient-centered research, education, and advocacy.

Simons Searchlight is an international research program that is creating an ever-growing database and resource network of rare genetic neurodevelopmental disorders including PPP3CA (learn more here). To expedite the path to a treatment, we need to register as many children with the mutation as possible.

We know that going through this isn’t easy and thankfully Simon Searchlight makes the registration process very easy. Should you run into any challenges, the support team at Simon Searchlight is happy to assist and even walk you through the process. Their support information is below.

The PPP3CA Hope Foundation has partnered with Citizen Health to help families better understand and organize their medical information while advancing PPP3CA research. Through this partnership, families can securely gather medical records from multiple providers, explore their records using an AI advocate built for rare disease, and—if they choose—contribute anonymized data to help accelerate research and improve understanding of PPP3CA neurodevelopmental disorder.

The PPP3CA Hope Foundation has partnered with COMBINEDBrain, a national collaborative research network dedicated to accelerating discoveries and treatments for rare genetic brain disorders. Through this partnership, we work together to amplify voices of families, advance data sharing, and support translational research that bridges the gap between lived experience and scientific discovery.

Jackson Laboratory Rare Disease Translational Center partners with rare disease foundations like the PPP3CA Hope Foundation to accelerate the path from discovery to treatment. Through this collaboration, mutation-specific mouse models of the PPP3CA gene will be developed, enabling researchers to study disease mechanisms, evaluate therapeutic strategies, and advance promising interventions toward the clinic. This partnership helps shorten the pre-clinical timeline and brings meaningful, actionable hope to families affected by PPP3CA-related disorders worldwide.