The Global Genes Project, an initiative of the Children’s Rare Disease Network, is a grassroots effort that was inspired by one rare disease parent advocate in 2009. Its main goals are to enhance awareness of rare diseases and support the millions of children and adults who are affected by them.

Approximately 7,000 rare diseases affect more than 30 million people – 75 percent of whom are children. Batten disease is classified as a rare disease, which means that it doesn’t garner nearly enough funding for crucial research or support services for affected families. The life of even a single child is priceless, but there are children living with Batten disease all over the globe. Please help us save every last one of them.