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7 Ways To Support Those with GNE myopathy on Rare Disease Day, February 28th

On Thursday, February 28, 2019, the Neuromuscular Disease Foundation (NDF) will take part in #RareDiseaseDay, a global movement to raise awareness for Rare Diseases. There are many ways to join us in supporting those living with GNEM.  We encourage you to take this opportunity to let the world know how this rare disease has affected you or someone you love. Here are some ways to amplify the voices of GNEM and related diseases on February 28 (and everyday!)

1.     Share your story. Use whichever platform you can to share how GNEM has affected your life.  Be sure to include #RareDiseaseDay and tag @curehibm for us to share it.

2.     Fundraise. It’s easy to fundraise via the many mediums available to you. Learn more here.

3.     Tell the world about someone who inspires / motivates you to fight harder for a cure for GNEM.

4.     Join our patient registry, share this link and tag someone who should also join.

5.     Make a donation in honor of someone (even if it’s you) and challenge others to do the same.  

6.     Seek out others with GNEM and offer guidance and friendship. This applies to caregivers as well as patients.

7.     Sign up for our monthly patient HUDDLE and share it with others who may benefit from this resource.

We hope you will help us raise our voices on Thursday, February 28th - any way you can - so that we may educate the world about this rare disease and move closer to a cure.

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