patient registry

The FOXG1 Research Foundation Announces the Launch of its Global Patient Registry to Accelerate Research For the Rare Genetic Disease, FOXG1 Syndrome

The FOXG1 Research Foundation Announces the Launch of its Global Patient Registry to Accelerate Research For the Rare Genetic Disease, FOXG1 Syndrome

Celebrating Rare Disease Day 2019, The FOXG1 Research Foundation, today, launched the critically important FOXG1 Syndrome Patient Registry developed in collaboration with Stanford University and digital health company, Beneufit. This FOXG1 global patient registry is among the most comprehensive and technically sophisticated registries in the rare disease space and is the vital step in helping researchers and caregivers understand the complexities of the disease. The FOXG1 Syndrome Patient Registry can be found at https://foxg1.beneufit.com.