Putting a face on the disease: recording a basic patient testimony video

by Robert Pleticha

The power of patient stories to illustrate how to live with the disease is extremely powerful. When patients can read experiences similar to their own, and gain insight on how to manage symptoms meaningful connections are made.

While most patient stories are written, we are starting to see more and more basic video patient testimonials. You don’t need to have a television crew at your house or an expensive camera to create one. Encourage your members to create their own short video on an aspect of the disease like receiving a diagnosis. Give them a 1 page instruction sheet that outlines the topic and video recording tips. See YouTube‘s recommended settings for videos.

Start a YouTube channel for your patient group. Place the videos collected from your members there for easy sharing and embedding (placing in your website). Could these videos help support your next fundraiser, awareness day, conference, or interactions with medical professionals?

Having basic patient stories on YouTube under your patient group name will certainly help:

  • Put a face on the disease
  • Create awareness among the general public and other patients and families on living with the disease
  • Inspire others to share their story
  • Increase traffic to your website (another place to include links to your site)
  • Create content for your website, newsletter, social media channels
  • Connect to members and highlight members’ unique experiences

Here, Ann talks about the years it took to be diagnosed with Alkaptonuria in hope it might shorten someone else’s time to a diagnosis. It took some basic editing. Extremely effective and supported by the AKU Society.

Watch Karen discuss her work with the NOMID Alliance. We caught her for this quick video at the end of another meeting. Use any opportunity of meeting people to consider asking about an interview.

Dan talks about his life and work with the TAR Syndrome Support Group.

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