How to Tell Your Story

By Chris Smith

“We don’t remember days, we remember moments.”

At the Global Genes summit last month, dozens of patient advocates packed into a hotel ballroom for a workshop on Telling Your Story: Media Relations and Public Speaking. Leading the session helped me realize the enormous privilege – and responsibility – of working with patients to share their experiences. These stories can educate, inspire and even save lives. It’s easily the most rewarding aspect of my work.


The workshop generated a lively dialogue, with ideas and advice coming from friends and leaders of patient organizations of all sizes and types. I’m grateful for the collaboration. For those who could not attend, here are some key concepts. To request a flip-book with tips and examples, please e-mail Hillary Titus.

Start with the Goal: Stories can help raise awareness, accelerate research, raise money, mobilize communities, drive legislation, influence regulatory decisions and more. Defining the purpose will help you determine how, when and where you tell your story.

Break through the Noise: It’s natural for advocates – especially those personally affected by rare disorders – to try to tell their whole story. “It’s more realistic and effective to tell part of your story with a clear call to action,” according to Lisa Schill, a parent advocate working to raise awareness of 21st Century Cures legislation. Add visuals and video to boost impact. Link your story to new research, a fund-raising event, or a personal milestone to maximize interest.

Know Your Audience: Do your homework by watching, reading and listening to media outlets where you’d like to see your story. Bring prior knowledge of the topics the reporter wants to discuss. Reading previous articles by the reporter will prepare you for questions he or she may ask. When preparing, be mindful of the messages you want to drive home.

Take the Driver’s Seat: Your story lends tremendous interest and credibility, so be sure to tell it on your terms. If there are questions or topics that you would prefer to keep private, let the reporter know in advance and set the ground rules. For example, some families limit their child’s media exposure. Share only what you are comfortable seeing or reading. It’s ok to decline interviews if you’re not comfortable.

Close the Deal: Every interview will end with, “is there anything you want to add?” Use this opportunity to reinforce key messages and clarify something you said earlier. Address a topic you want covered that the reporter did not bring up and make sure to repeat your “call to action.” To see this approach in action, watch a recent story produced by CBS Sunday Morning, “Putting a Face on Rare, Incurable Diseases.”

Following these tips will help you achieve the goals you defined at the start!

“Sharing the rare disease journey of someone you love can be intense, especially when testifying before the FDA and its advisors. Preparing your thoughts in advance and knowing that it’s ok to share emotions can help you communicate clearly and with impact.”

 – Carol Roberts, Advocate and Executive Committee Member, PBCers Organization

A version of this blog also appeared on Global Genes’ the RAREDaily