Show Your Colors
Join the #ShowYourColors4NDM campaign in support of Rare Disease Day on 28 February to raise awareness about rare diseases like Non-Dystrophic Myotonia (NDM).
Today more than 300 million people live with a rare condition. In addition to often delaying in receiving a correct diagnosis by up to 10 years or longer1, the lack of disease awareness can result in limiting access to resources that those living with these often-debilitating conditions desperately need. 1,2 Raising broader public awareness of rare diseases such as Non-Dystrophic Myotonia (NDM) could therefore have a significant positive impact on patient quality of life.
How can you make a difference:
Even if you are not affected by NDM or another rare disease, you can help raise awareness in the following ways:
- Take the Challenge: Get creative by putting hand to paper – yes, literally create images with your palm prints in different colours. This can be fun by yourself, with colleagues, friends or even with your kids. Then simply share a picture of your masterpiece on your social pages with hashtag #ShowYourColors4NDM. Get creative! The brighter colors, the better!
- Tag & Nominate: Why not challenge a friend by tagging them to #ShowYourColors4NDM? This way you help us spread the message further.
- Share the Hashtag: Post #ShowYourMove4NDM on your social media pages with a link to the campaign page: www.UnlockNDM.eu
- Spread the Word: Download our campaign images here and share it across your social media platforms with the hashtag #ShowYourColors4NDM.
Don’t forget to use the hashtag #ShowYourColors4NDM and visit www.UnlockNDM.eu for more information on NDM.
References
- Díaz-Manera J et al. Understanding the Impact of Non-Dystrophic Myotonia on Patients and Caregivers: Results from a Burden of Disease Healthcare Survey. EMJ. 2021;6[2]:37-46
- Díaz-Manera J et al. Impact of restricted access to, and low awareness of, mexiletine on people with myotonia: a real-world European survey. Neuromuscul Disord 33,[2]: 208-217