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35 Years & Growing: Personal Stories of Patient Advocacy



In honor of NORD’s 35th Anniversary, 35 Years & Growing: Personal Stories from the New Era of Patient Advocacy is a new video campaign soliciting the submission of reflections from patient advocates via self-recorded videos. Rare disease advocates are invited to submit videos commenting on what advocacy means to them, what motivates them, the future of patient advocacy, and other suggested topics.

What does rare disease advocacy mean to you? Share your perspectives on rare disease advocacy by submitting your video story!

In order to submit a video story, please review the video tips and content guidelines, then proceed with submitting a video using the *Google form located below. 

Recording Tips & Content Guidelines

Video Recording Tips

 Try to avoid wearing clothing that has visible logos, brand names, or loud prints/patterns.

 Shoot your video horizontally (landscape mode) not vertically (portrait mode).

 You should be somewhat close to the camera, perhaps your chest and up will show. See the examples on the page here.

 It helps if you mount your camera or phone on a tripod or a stand but is not necessary.

 Record your video in a quiet space for better audio quality.

 A well-lit room and a solid background (sitting with your back to a wall) are helpful.

 Submit your video in .mp4 format

 Videos should be 2-4 minutes long

Content Guidelines

What to talk about in your video: 

(1.) Share a little about yourself: your name, where you’re from, the rare disease that you are impacted by and how (are you the patient or are you an advocate for a loved one?) approximately 10-30 seconds

(2.) Answer the following two questions in approximately 30-60 seconds:

-a- What motivates you to be an advocate?
-b- What would success ultimately look like to you as a rare disease advocate?

(3.) Choose one or two questions from the following to answer in approximately 60-90 seconds:

-a- How have you grown as a rare disease advocate?
-b- What can be done to get more people involved?
-c- What are the key issues facing the rare disease community?
-d- Based on your experience, what advice do you have for new advocates?

(4.) Sign off! – “Thank you for hearing my story. Here’s to the new era of patient-focused advocacy, a future that will be even stronger when we work together.” approximately 10 seconds

Submissions - Now Closed

Submissions for 35 Years & Growing: Personal Stories from the New Era of Patient Advocacy closed on Wednesday, September 19. Thank you for your interest!

Sample Videos

Get inspired! Before submitting your video, take a look at the examples below for ideas and to get a sense of the content guidelines. For more examples, check out our Youtube channel here.