RARE Moments Video Project Submission

Global Genes | RARE Project would like your voice to be heard!

Share your home videos!

We are currently looking for home videos that illustrate what life is like for rare disease patients and caregivers on this complex and often emotional journey. This could be an assortment of moments that you’ve captured on your phone, camera, or digital recording device. We want the key moments, the most beautiful, personal moments that represent not only the diseases, but you and your child(ren) as well.

A few examples of what we are looking for in these clips:


In Pain





Hospital Visits





Important Events

At Play



Be creative, think outside the box.  Look for clips that are shot well, with nice light. Give us variety! Old footage, new footage, maybe even something your child has shot. We want personal, private moments. This type of content will send the most powerful message.

What are we going to do with this content?

We are working with an award-winning film team to select submissions that will be compiled together to create a visual storyline of life with rare and genetic diseases. This is your moment to be heard.

Guidelines for Submission:
  • For footage to be used, you must submit a video release form
  • Submit video clips and release form by January 15, 2013, to RareVideoSubmissions@gmail.com
  • Label subject of email with “Your name/Child’s Name – Disease
  • Clips should be no longer than 100 MB
  • If clips are larger than 10 MB and unable to email, please send via wetransfer.com
  • Please also submit video of you, your child, or both looking directly into the camera for 5 to 10 seconds.  Frame this short close and above your shoulders