Rare Disease Day is a poignant time to think of all those facing rare diseases, particularly little-known and often under-researched conditions like rare fatal neurological disorders. These diseases, occurring as rarely as one in 100,000-300,000 births, are a big challenge because of their devastating impacts but coupled with a scarcity of resources and support systems for them. The B Brave Foundation fills that painful void for many children and families. Rare diseases can be profoundly isolating. Despite hundreds of millions facing a rare disease of some kind worldwide, most have no cure and lack sufficient medical research funding, leaving patients…