Major Victory Scored for Rare Disease Community

By Laura Edwards

Thanks to our partner, the EveryLife Foundation, for their work on behalf of the rare disease community. The lives of children with Batten disease depend on not only the momentous work being done in research labs across the nation and world, but also on the ability of this research to make the leap from bench to bedside. The EveryLife Foundation’s CureTheProcess campaign – an effort Taylor’s Tale endorsed earlier this year – is dedicated to putting treatments for rare/orphan diseases like Batten disease on the fast track.

A major victory was just scored on behalf of everyone who suffers from rare/orphan diseases, due in large part to the work of our friends at EveryLife. Read the press release.

World Rare Disease Day and the Global Genes Project

By Laura Edwards

World Rare Disease Day is this coming Sunday, February 28. Please join the Global Genes Project and people all over the world by wearing jeans this Friday to show your support!

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.

Global Genes Project

By Laura Edwards

The Global Genes Project, led by the Children’s Rare Disease Network, has been established to raise awareness of rare diseases that affect children, such as Batten disease, and promote equal access to lifesaving treatments for those children. Learn more here.