KICKSTARTER IS LIVE! 

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 info@ararefilm.com

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

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.  

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Nick Kovacic - Director

Nick Kovacic is a founding partner of Digital Cave, a Baltimore-based documentary filmmaking team that has directed and produced three feature-length documentaries: Brewmore Baltimore, 2014, Decanted, 2016 (NETFLIX Exclusive), and Agave | The Spirit of a Nation, 2018 (SXSW ’18 Spotlight Docs). Brewmore has gone on to win an EMMY for Outstanding Achievement in Documentary and was awarded the 2014 Food Filmmaker of Year from N.Y. Food Film Festival. He works and collaborates with a diverse group of filmmakers exploring new mediums that are redefining visual storytelling.

Areeg Sweis - Producer

Areeg Sweis has over ten years of experience in production management for film and television. She’s worked with many major studios, including Nickelodeon Animation Studios, The Jim Henson Company, DreamWorks Animation, Digital Domain, and Weta Digital in New Zealand. Some of her credits include: “Kung Fu Panda 3”, “Maze Runner: The Death Cure,” “Black Widow,” “WandaVision,” and the final season of “Game of Thrones.” Born and raised in the south suburbs of Chicago, she spent her days getting lost in books, television, and film, igniting her passion for storytelling. She believes in the art of producing, the ability to transform chaos into order, and the power to unite, inspire, and lead to create compelling content. She received her B.A. and M.S. from DePaul University, majoring in Digital Cinema.

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Nate Pesce - Director of Photography

Nate Pesce is an editorial/documentary photographer and cinematographer based in the Baltimore-Washington D.C. area. With a visual approach stemming from a film education in Los Angeles and a self-taught photojournalism career, he produces images focused on everyday life in cultures and the human portrait. Recent work includes cinematography on the feature documentary “Decanted,” released on Netflix in 2017. He has been published in The New York Times, Wall Street Journal, Washington Post, Baltimore Sun, AARP, and more.