Education

RARE Disease Storytelling

Although individual diseases are vastly different, our stories and experiences bond us as a rare community. This page offers tips and resources for storytellers.

Sharing your rare disease story:
A way to find new allies and guide those who come next

When you share your rare disease story the life you change may not only be your own. Doing this should have benefits to you personally. You’ll feel seen and less alone, less misunderstood. But you may also open the door for others to lend you support. And what you’ve learned from your lived experience will aid the next person to have your condition or even a different diagnosis with some similar aspects.

Global Genes offers several ways to help you share the story of your life with a  rare disease. This page will offer you a few ways that you can share your rare story with the Global Genes audience.  You will also find several resources that can guide or instruct you on how to best tell your story whether you choose to make it a blog post, a podcast, a conversation, or a video.

If you’re not convinced you want to share your story, we respect your decision. Many people may prefer to keep their life more private.  But if you are still debating sharing your story, the resources on this page may help you make the decision.

“ I noticed early on that sharing our story had a therapeutic element for me. Getting the feelings of fear, isolation, guilt and hopelessness off of my heart made me feel a little lighter, and hearing that I wasn’t alone in the way that I was feeling, brought me strength. In time I realized how much sharing our experience could help someone just embarking on their own journey, much like the way it helped me. “

– Shannon Bennett,
Rare Mom & Global Genes RARE Concierge Patient Navigator

Where To Share Your Story

Blog About It

Write your story as a blog post or article – 500 to 1000 words recommended.

You should include at least one photo – they help tell your story and allow others to connect with you.

Tell Your Zebra Tale

Make a 1 minute video on social media – say who you are, what your “why” is, why you #careaboutrare and work your tail off to advocate. Use the #ZebraTale, and Global Genes may re-share the post.

Chat among some (new?) friends

Our private Facebook group is a great place to offer and ask for advice from those who are most likely to understand. It can also be a good place to test-drive your story in a less public setting.

Make a Movie

If you’re ready to turn your story into a short video, we can help! We recommend videos be 3 to 10 minutes long. We might even choose your film to screen at one of our events.

Resources

How To Tell Your Story

Raise Awareness By Telling Your Story

Many in the rare disease community do not know how great an impact they can have by sharing their story. Telling your story can be difficult, but this toolkit may help you overcome the challenges by offering advice on ways to get started.

Learn More

A Guide to Public Speaking

The personal stories, resources, tips, and suggestions for self-reflection in this guide will make the road to advocacy for your rare disease more manageable, and you will find public speaking less daunting after reading through the toolkit.

Learn More

The How & Why of Sharing Your Rare Disease Story

In this webinar, rare advocates Parvathy Krishnan, Effie Parks, Luisa Leal, and Daniel DeFabio talk about how and why sharing your rare disease story can help to raise awareness.

Watch Webinar

Cure CMD x Story Collider Workshop: The Power of Storytelling in Rare Disease

Learn how to tell your rare disease story through brainstorming and personal narrative techniques, and use your story to educate, fundraise, and raise awareness about your or your child’s rare neuromuscular disorder.

https://www.youtube.com/watch?v=rfyeygU5xiY

Telling Your Story Webinar from Courageous Parents Network

We make sense of the world through stories. Of course the more powerful stories, the ones that change how we think of ourselves. Figuring out the elements of your story also helps you make meaning of what happened and integrate it into your life moving forward.

Learn More

Telling Your Story: Media Relations and Public Speaking

Stories from the rare disease community can educate, inspire and even save lives. A workshop at the 2016 Patient Advocacy Summit, Telling Your Story: Media Relations and Public Speaking, provided key takeaways about storytelling

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Making the Most of Your Storytelling Wisdom

Many people write blogs, record videos, or contribute to communal sites dedicated to amplifying the voice of patients. Here are some tips to help you to decide how and where to promote your story.

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Tips for Sharing Your Story with Pharma

Storytelling is an appropriate starting point for collaboration among advocates and pharma because it helps relate lived experiences and to find intersections that bring focus on common goals.

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What’s Your Storytelling Method?

Have you ever been asked to contribute a story about living with a rare disease, and while you want to support the cause, you’re not sure how to do it? Learn the storytelling process that works best for you, and use it to your advantage.

Learn More

RARE Storytelling on Social Media

RARE Storytelling on Instagram

Learn why Instagram is an ideal platform to tell your rare disease story, and how to get the most out of this channel by better using hashtags and other IG features from some of Instagram’s finest in rare disease: Soniya Vadher-Patel and Tameka Diaz.

Watch Session

Effective Social Media Management

Sometimes more isn’t better and in certain social channels — Facebook, Instagram, Twitter — that is absolutely the case. Expertise provided by: Melissa Hogan and Stephanie Fischer

Watch Webinar

How to Promote Your Rare Disease Story Through Social Media

This toolkit helps storytellers bring greater awareness to their personal journeys by taking advantage of
social media. It focuses on the value, use, and practical application of social media to promote our stories.

Learn More

A Story about Filmmaking and FSH Muscular Dystrophy

Filmmaker Taylor Toole takes us inside the world of Lexi Pappas, a documentarian who lives with facioscapulohumeral muscular dystrophy (FSHD). Learn about the remarkable woman behind the camera.

Watch Video

How to Make a Documentary

Have you wanted to tell the story of your life with a rare disease as a documentary or a short video? Global Genes has partnered with The Disorder Channel to present workshop trainings to get you ready to make your story into a short film.

Learn More

Video Release Form

Not everything about filmmaking is fun. Whenever you record someone, you need to get their permission, and be specific about how you will use the video. If you need a video appearance release form this is the one Global Genes uses.

Download Form

RARE Storytelling on Podcasts

RARE Podcasters’ Frequently Asked Questions

RARE Podcasters came up with a list of questions they hear often. Be prepared with answers to these questions!

Download PDF

How to Be a Podcast Guest

A panel of three leading RARE disease podcasters will get you ready for prime time, help you have your story ready to go, and show you how to find interview opportunities and be a well prepared guest.

Watch Video

Dynamic and Impactful Podcasting

What is the best strategy to reach a wider audience with your rare disease story? During this session from the 2021 Patient Advocacy Summit, rare disease podcasters help you plan for success.

Watch Video

Storytellers Share Their Why

Hear from storytellers from around the world who are navigating life with a rare disease on why sharing these stories is important. Michelle Rivas leads this panel with Anton Morkin, Dorthea Lantz, and Daniel DeFabio.

Watch Webinar

Importance of Sharing Stories from Patients and Caregivers

This podcast from Two Disabled Dudes featured three top advocates who regularly use media to amplify the patient voice: Daniel DeFabio, Michelle Rivas, and Eve Dryer.

Listen to Podcast

Why Sharing Your Rare Disease Story Can Help

Rare disease advocates talk about the importance of sharing your story, and how rare disease storytelling has helped them throughout their rare disease journey. 

Read More

Lesley: Why I Tell My Story

This is a short clip the film “Born to Be Heard” that resulted from Lesley and Kayla’s participation in the 2023 RARE Compassion Program when they took the RAREly Told Stories workshop from Global Genes and The Disorder Channel.

Rare Concierge

Try our free one-on-one service for patients looking for information and resources on their rare disease.

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