October 2018: production has begun on the first of these films. Principal photography is complete on a film dealing with PACS1.
We’re unsure if or when we will be looking for a topic for our next film.
If there isn't a film about your rare disease there should be one. We want to help you make it.
We know filmmakers who are ready to start shooting your story.
The first step is to share that story with us.
Think about what your story would be, if you could make a short film of your struggle with rare disease.
Then make a short video, of one minute or less, and tell us about your story. The video doesn't have to be fancy. You can use your smartphone to make it. (Shoot it horizontally not vertically.) We'll send a few questions you should answer on camera but definitely add whatever is important to you.
We'll watch the videos and decide whether yours is a good fit. If we pick your story, we'll match you up with a filmmaker and fund your film, so that it becomes a reality.
And we might screen your film at our next installment of our rare disease film festival.
There are 7,000 rare diseases. There should be a film for all 7,000 of them.
One of the key factors we are looking for is that there is not currently a film on your rare disease already out there. Search YouTube to check.
Making your video
Questions to answer:
I have (my child has ) a mutation of the ____ gene which causes _____ (disease name).
I know ____#___ people with this disease personally and worldwide there are about ___#___.
Describe some symptoms and the impact on your daily life.
Describe where you are in the process of finding treatments or more research.
Tips for shooting your video:
Please shoot horizontal (landscape mode) not vertical (portrait mode).
You should be somewhat close to the camera, perhaps your chest and up will show.
Speak as if addressing the world (the general public) not just a couple of fellow rare parents.
It helps if you mount your camera or phone on a tripod or a stand.
A quiet room helps the audio.
A well lit room helps. Sit facing a sheer white curtain with sunlight coming through if you can. The sheer creates better lighting than sunlight through no curtains.
How to share your video with us
Email it to us: firstname.lastname@example.org