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Join NDF in highlighting the rare realities of rare disease. You can do this by sharing on social media using the hashtag #RareReality. Get involved by sharing your story, posting a photo depicting your reality, purchasing awareness gear, and/or a mix of all three! #RareReality isn't just a platform for patients, it's a platform for rare family members and caregivers alike; set up to help bring attention to the needs and strengths of the rare disease community by offering a glimpse into life with "rare." 

Tag us in your post and we just might share it on our channels! We look forward to seeing the community share the #RareReality of rare disease. 


Share A Picture

Looking for a simple way to share your #RareReality? Follow the steps below:

1. Click below to download the #RareReality 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 #RareReality

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 your rare disease and/or what you want people to know about life with your rare disease. 


I'm joining @NeuromuscluarDiseaseFoundation in sharing the rare realities of rare disease. What is your #RareReality?  Learn more at My #RareReality is (insert name of rare disease or something you'd like to share about your rare reality).


I'm joining @CureHIBM in sharing the rare realities of rare disease. What is your #RareReality?  Learn more at 

Share Your Story

Sharing your story is a great way to bring awareness to your rare disease, while allowing a real look into your reality.  NDF is proud to feature stories shared by members of our GNE Myopathy community. Click their pictures below to learn about their #RareReality of GNE Myopathy. 


Patient Stories

Caregiver Stories

Family Member Stories

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

Submit it below to be featured on our website.

Raise Awareness

Raise awareness in style by purchasing and wearing any of our conversation starting #RareReality products here. A portion of the proceeds from every purchase will go to helping NDF's international Patient Advocacy Program.