Rarely Told Stories Workshop 2

May 31, 2022 – May 31, 2022

The Disorder Channel
Rarely Told Stories Workshop 2022

Let us help you tell your rare disease story. Global Genes is thrilled to be partnering with The Disorder Channel to host a unique virtual workshop for advocates and individuals and families living with a rare disease to improve their skills in documenting their journey and highlighting their perspective on rare diseases. One of the most impactful ways to tell your story is through video and film-making. The workshop is your chance to learn the basics of film or video production from award-winning rare disease filmmakers. You will learn what to shoot, how to shoot it, and how to edit it into your finished video. View the course agenda here and frequently asked questions here

You have two chances to attend a 1-hour RAREly Told Stories Virtual Workshop – May 31, 2022 12pm-1pm EST or June 29, 2022 7pm – 8pm EST. Spots will be limited to 30 attendees per workshop so make sure to register early. Selected films will then be chosen to be showcased at the Patient Advocacy Summit in September or at the RARE Health Equity Summit in November and through other Global Genes communications.

Register for the May workshop

Register for the June workshop


Meet The Disorder Channel Team

Dan and Bo

As parents to children with rare diseases, Bo Bigelow and Daniel DeFabio founded The Disorder Channel and Disorder: The Rare Disease Film Festival in order to amplify the individual stories and voices of the rare disease community to improve access to quality care. Through their efforts, they have been able to bring increased attention to more than 150 rare diseases.