Professional opera singer Jessica Klein-Foglio is about to take the world stage when her son is diagnosed with a rare disease, and science knows nothing about it. With no treatment in sight, she mobilizes an international community to search for answers.
Rare is a feature length documentary currently in production.
Rare Disease Fact
80%
of rare diseases are genetic in origin.
Synopsis
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.
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 key moments in 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.
Why Rare?
This film is dedicated to all the families in the world experiencing life through the lens of a rare disease. We are providing a platform, message, and an opportunity to help raise awareness to a larger audience.
