Awareness to innovation: Sophie’s Hope Foundation paves the way for GSD1b research By Sophie’s Hope Foundation

https://rarerevolutionmagazine.com/awareness-to-innovation-sophies-hope-foundation-paves-the-way-for-gsd1b-research/ Ultra-rare diseases have a greater impact than statistics show Glycogen storage disease type 1b (GSD1b) is among the rarest conditions within the GSD family of inherited metabolic diseases. While GSDs collectively occur in approximately 1 in 100,000 births, GSD type 1 is the most common subtype, further divided into type 1a and type 1b. GSD1b accounts for only about 20% of these cases and affects an estimated 1 in 1,000,000 births, classifying it as an ultra-rare disease. Because GSD1b is so rare, progress in understanding and treating the condition has been limited; however, behind the statistic is a community profoundly impacted by the disease and determined to accelerate change.