Skip to main content


Join NDF and the rare disease community in honor of Rare Disease Day by highlighting what makes you rare! There is more to all of us than GNEM.  We want to learn about you and what makes you uniquely “YOU”.

You can do this by sharing on social media using the hashtag #whatmakesmerare. Get involved by sharing your story, posting a photo depicting what makes you unique (are you an artist? a mom? an uncle? a musician?) #Whatmakesmerare isn't just a platform for patients, it's a platform for rare family members and caregivers alike; designed to help bring attention to the unique aspects of all of us!

Tag us in your post #ndf #curehibm #gnemyopathy #rarediseaseday and we just might share it on our channels! We look forward to seeing the community share what makes them rare!


Share A Picture

 Simple ways to share your #WhatMakesMeRare :

1. Click below to download the #WhatMakesMeRare Poster 

2. Add your statement or rare disease to the poster

3. Take a picture with the poster

4. Share your picture on social media using the hashtag #WhatMakesMeRare

5. Tag us so we can see it and share it

It's that simple!

Check out the example above, shared by GNE Myopathy patient and NDF Patient Advocacy Program Manager, Amy.

Wondering what you should say with your picture? Copy & paste the sample posts below, then add facts about what makes you rare and/or what you want people to know about what makes you unique. 


I'm joining @NeuromuscluarDiseaseFoundation to share what makes me rare (other than my rare disease). #WhatMakesMeRare?  Learn more at #WhatMakesMeRare is (insert something that makes you rare or something you'd like to share about your rare reality).


I'm joining @CureHIBM in sharing what makes me rare (other than my rare disease). #WhatMakesMeRare?  Learn more at 

Share Your Story

Sharing your story is a great way to bring awareness to your rare disease, while allowing a look into what else makes you unique.  NDF is proud to feature stories shared by members of our GNE Myopathy community. Click their pictures below to learn what makes them rare.



Patient Stories

Caregiver Stories

Family Member Stories

How has GNE Myopathy affected your life? Share your #WhatMakesMeRare with us.

Submit it below to be featured on our website.