NORD (National Organization of Rare Disorders) in conjunction with ReelDX, an on-line medical education provider, will be creating a Rare Disease Video Library to educate physicians, other medical professionals, and students preparing for healthcare careers about rare diseases and what it’s like to live with one. The CSRF would like to invite you to submit personal videos on your experience with Cushing’s. You do not need any equipment other than a phone camera.

NORD chose this platform as video is a preferred learning tool for this audience and they value hearing from patients and caregivers first-hand. NORD will be using only three, one minute videos per disease, but the CSRF would like to collect as many videos as possible for use in future CSRF projects. Instructions are below.

Instructions

1. Find a place with good light in a quiet space.
2. Set up the camera/phone in horizontal position.
3. Position yourself/child close to the camera to fill up the screen:

4. Create three clips, approximately one minute each, answering the following questions:

• Clip 1: What are/were your (child’s) symptoms and/or physical features?
• Clip 2: Describe your (child’s) journey to diagnosis: Was there a delay in diagnosis or misdiagnosis?
• Clip 3: What are the challenges facing your (child’s) daily living?

Parents who create a video about a pediatric Cushing’s are encouraged to have the child with them, if possible. Observation of physical signs and symptoms can be a helpful teaching tool and is a unique benefit of the video format. You can try zooming in on a photo, but please make sure the video is of good quality.

5. Once you have completed your videos, please email [email protected] for instructions on how to upload the videos and how to obtain a consent form.

The videos that the CSRF selects to provide NORD, may be made available on any or all of the following platforms: the NORD website, NORD’s YouTube channel, and a website hosted by ReelDx, a company that specializes in the use of video for medical education and is HIPPA-compliant. Medical schools, other health-related training programs, and medical professionals subscribe to ReelDx. NORD’s Rare Disease Video Library will be available free to all.

The videos that the CSRF does not provide to NORD may be placed on our website, the CSRF YouTube channel, or used in future projects.