In August, we #Dazzle4Rare. We will be tweeting, posting, liking, and sharing for rare disease. It’s projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With 10% of the population suffering from between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.
For those wondering, why are we doing this, the answer is simple.
With 10% of the population living with rare disease and potentially 7,000 rare diseases out there, it’s so hard for all of us to reach the 90% who do not live with a rare disease and especially the condition(s) we have. If we band together and show the world we are here and have a voice while sharing each other’s stories, we have an opportunity to raise a greater awareness. We can band together as a wider, greater community and spread awareness together and for each other. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.
What’s not to love about that?
If you would like to participate during the week of August 15th through the 21st, it’s simple! You can like, share, and retweet any of the posts on our social media pages or those of our partners (TBD). We also encourage you to share information about rare disease, your own story, or educational links and information for everyone to learn more – all using the hashtag #Dazzle4Rare. Tag your selfies. Tell your rare disease story. Share someone else’s rare disease story. Raise awareness.
Let’s dazzle the World and show everyone how rare can shine!