“Rare” is a documentary that gives its viewers a glimpse into the world of rare diseases, something that many people know little about. Until now, the project has been funded by its makers, but it needs more money if it’s going to make it to people’s screens. In order to accomplish this, Digital Cave Media and Sweis Entertainment launched a Kickstarter to raise $45,000. The catch? All of the money has to be in by October 28, or else the filmmakers won’t see any of it.
“Rare”
Areeg Sweis was inspired to make this documentary after reconnecting with one of his old friends, Jessica Klein-Foglio. Upon meeting again, Sweis learned that her son was a rare disease patient, having been diagnosed with Salla disease.
Jessica and her husband have done everything they can to help their son, going so far as to start the Salla Treatment and Research (STAR) Foundation. Their determination and strength inspired Sweis for this upcoming documentary. He wanted to display adversity in a different light while framing the importance of advocacy, research, and the power of community.
The documentary focuses on Jessica’s family, alongside other rare disease families, as they navigate the world of rare diseases. It follows the journey to diagnosis, the treatment landscape, and current rare disease research. Along with patients and their loved ones, the documentary also features leaders in their fields, such as William Gahl, MD, PhD, a knowledgable geneticist from the NIH.
This documentary is not only for those impacted by a rare disease, however. In fact, one of its major goals is to raise awareness and advocate for these patients. In addition, “Rare” utilizes themes that resonate with everyone, such as community and family.
Donate to “Rare”
If you want to donate to help this film make it to screens, here are some ways you can do so! Firstly, you can donate to the Kickstarter campaign “just because it speaks to you,” or you can receive a gift in return for a certain amount of money donated. For example, a $35 donation earns you a T-shirt.
Just make sure you donate before October 28th, as this is the deadline for the campaign. If “Rare” isn’t able to raise the full $45k, then it won’t receive any of the donations at all.
If you want to learn more about the documentary, you can find more information here, or follow @ararefilm on social media like Twitter, Facebook, and Instagram.
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