The Rare Remy Foundation

Our mission is to improve the lives of Remy & his peers by accelerating research to understand and treat DHX30-associated neurodevelopmental disorders.

More than 30 million Americans are affected by 10,000 known rare diseases, yet fewer than 5% of those rare diseases have an FDA-approved treatment [1].

Only about 170 people worldwide are known to have a DHX30 mutation—placing DHX30 Syndrome firmly in the ultra-rare disease category [2].

Lizz and Bobby attend the Global Genes RARE Drug Development Symposium

After their son, Remy, was diagnosed with a DHX30 mutation, Lizz and Bobby refused to stand idly by and hope for science to catch up in time. They dedicated hundreds of hours to learning and networking in order to fully understand the rare disease landscape, build expertise as advocates, and pilot the tools and direction needed for therapeutic development. They were hopeful yet realistic about the challenges ahead – the rarity of the disorder and the immense hurdles of treating a genetic condition were daunting, but they felt a deep responsibility to contribute, accelerate progress, and change the outlook for their son and others like him.

Lizz and Bobby were both undergraduates of Duke University. Lizz earned her MBA from Columbia Business School and built a career at leading global institutions in public relations and finance. She has won awards from Fast Company, CLIO, and SABRE for her innovative work and served as Vice Chair of the Board of Directors for LitWorld.

Before earning his master’s degree in engineering from the University of Pennsylvania, Bobby worked in research and development in the medical device industry and has since pivoted to consumer technology. He is a patent holder and has been credited in Nature for his contributions.

Tapping into Lizz’s business and strategy acumen and Bobby’s experiences as a biomedical and research engineer, the couple formed the Rare Remy Foundation in 2026 as their love song to their son and to give hope to other families impacted by DHX30. They are committed in their mission to improve the lives of Remy & his peers by accelerating research efforts to understand and treat DHX30-associated neurodevelopmental disorders.

Our Consortium Partners

The Rare Remy Foundation is honored to have been accepted into key research and rare disease consortiums. As a lean nonprofit, the Foundation depends on these organizations for advisory services and resources to fulfill its mission. We are truly grateful for their partnership.