Social Media RARE Toolkit Launch

The My Normal Project is pleased to announce the launch of the How to Promote Your Rare Disease Story Through Social Media RARE Toolkit. My Normal is a proud content provider for this Global Genes resource. 

The new Toolkit complements the Using Storytelling title but goes one step further by helping storytellers bring greater awareness to their personal journeys by taking advantage of social media. This Toolkit focuses on the value, use, and practical application of social media to promote our stories and can be viewed free online and downloaded. 

Storytelling Tip - November 23

"There are people with narcolepsy all over the place. 1 in every 2,000 people have narcolepsy. So it's really not that rare but it's invisible...By me telling my story, other people realized that they weren't alone either. See, we don't always have a cure for the diseases, but we do have a cure for the loneliness today," says Julie Flygare, the founder of Project Sleep & author of Wide Awake and Dreaming: A Memoir of Narcolepsy. Julie's tip from experience,

"Prescribe another patient."

-Julie Flygare, Stanford Medicine X 2015

If you could be that patient, that shares your health story to support others in feeling less isolated, try Julie's storytelling advice, "Begin Anywhere–Just Begin." Julie offers her perspective and other practical suggestions in the Using Storytelling to Raise Awareness for Your Rare Disease RAREToolkit.  

Journey with Storytelling

"For not all stories begin 'Once upon a time' and finish with 'and they all lived happily ever after', as every patient's story of living with a rare disease is unique."

-Elaine Benton, author and blogger battling two chronic diseases

Read Elaine's latest article at the Huffington Post on her journey with storytelling

Why Bother Telling Your Story?

 

Sharing a rare disease story may feel like one more thing to worry about on a growing task list for managing a rare disease. Check out the newest RARE Toolkit, Using Storytelling to Raise Awareness for Your Rare Disease—co produced by Global Genes and My Normal—for straightforward advice on ways to get started on your story without adding storytelling stress.