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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. 

Hear from the Filmmakers

We want to hear your story! 

Now's your chance to be featured in Rare! 

Rare diseases have a huge impact on each and every one of our communities, yet it is so rarely talked about at the same magnitude. Together, let's show the scale of impact that rare diseases truly have. 

How? We want you to share your story. We want to help amplify the voices of those who are living with a rare disease or are caring for someone who does. 

Here's How to Participate 
  1. Share a written or video social media post about your story, or more about your rare disease. 

  2. Remember to tag us @ARareFilm and use the hashtag #ARareFilmChallenge so that we can find and amplify your post. 

Not on Social Media? Email us with your story at

At the end of the Kickstarter Campaign, we will review all submissions and select a winner to be featured in the film.
Digital Cave


Rare Disease Fact 


of rare diseases are genetic in origin.



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. T