With 350 million patients, rare diseases represent the largest disease community on the planet. In fact, if all rare disease patients lived in the same country, they would represent the world’s third-largest country, behind only China and India. Of course, with so many included conditions (more than 7,000 and counting),…
The Long Sprint - a Column by Laura King Edwards
Recent Posts
- I am still fighting for new Batten disease treatment options
- Our late son still has a place in our family’s Halloween celebration
- Trial of gene therapy for CLN7 Batten disease coming to Canada
- Processing grief so that it becomes fuel for Batten disease advocacy
- 3D retina model reveals how vision loss may begin in juvenile Batten disease
- Back-to-school season reminds me of the life my son should be living
- Missing my son in heaven brings a unique kind of loneliness
- CBD may delay seizures, shorten their duration in late infantile Batten
- Behind the Batten disease advocate is a grieving mother
- Research takes time that our children with Batten disease don’t have