About Rare

Jessica Klein-Foglio was living her dream of being a professional opera singer when she realized that her son started missing his developmental milestones. After years of testing, and a misdiagnosis, they learned he had a rare disease called Salla. When the Foglios got home after receiving the diagnosis, they jumped on the computer to google the disease, and found nothing. Through Facebook they soon discovered other families around the world with children just like their son.

 

Today it is said that there are 7000 known rare diseases, yet only 5% have an approved treatment by the FDA. This means that of the 30 million people in America living with a rare disease, 28.5 million of them don’t have a treatment. Expand this to the entire world and that number grows to roughly 300 million -making this one of the most significant health challenges of our time.

 

Rare diseases touch the lives of every community throughout the world, and yet little is known about the history of their origins and research progress today. This film will explore the key moments of the history of rare diseases and the continuing shift in the debate over those able to impact new medical discoveries.

 

Told through interwoven storylines, it offers a first-hand account of what it takes to go from diagnosis to treatment, the power of communities coming together, and the increasing belief that anyone can make a difference. ​