Jordan’s Guardian Angels is proud to announce a brand-new partnership with the Rare Epilepsy Network (REN), one of the foremost global networks in the rare disease community.

“This partnership creates an important pathway to collaborate on research efforts impacting our families, those who have Jordan’s Syndrome or Epilepsy, and the global community,” said Jordan’s Guardian Angels Assistant Project Manager Brittany Cardoza.

Founded in 2013, REN is a volunteer network that welcomes all rare epilepsy organizations and broad epilepsy stakeholders to come together around research efforts to improve lives. REN has quickly grown to include more than 32 organizations encompassing more than 41 diseases.

Jordan’s Guardian Angels was first connected to REN through Leah Adams Deason, advocate and Mom to Ozzie who lost his battle to Epilepsy and Jordan’s Syndrome last year.

“We are incredibly grateful to join REN because we recognize the need for and the value of partnerships in the rare disease space,” Cardoza added, “and are excited to help create and share resources for our rare epilepsy families as well as the greater rare epilepsy community.”

This is the latest in a long line of partnerships JGA has recently formed, including The EveryLife Foundation, Rare Disease Legislative Advocates (RDLA), Global Genes, Rare Revolution Magazine, Patient Worthy, National Organization of Rare Diseases (NORD), Extra Lucky Moms, Rare. and more.

We are proud to join forces with these incredible organizations, making a difference in the lives of so many.


March 31, 2022