Friday, February 28, 2014
Get the word out about Rare Disease Day
Today is a special day set aside to spread the word about Rare Diseases. As my readers know, I have a daughter with a Rare Disease, RettSyndrome (check out Marebear's page to learn more). It is very important we spread the word about these rare conditions in an effort to make sure no one goes undiagnosed.
In honor of Marion, I wanted you to know today is rare disease day! Rett syndrome is a rare disease, but it is become more known thanks to those that spread the word. The more people that know about disease like Rett syndrome, like policy-maker, researcher and health care profession the less likely people we go undiagnosed. By spreading the word about Rett syndrome, will also help raise awareness and help to find a cure!
What is Rare Disease day?
"Rare Disease Day is an annual, awareness-raising eventco-coordinated by EURORDIS at the international level and by National Alliancesand Patient Organizations at the national level."
To learn more about rare disease day at http://www.rarediseaseday.org/
Go ahead and share this post with as many people can you can. Let see if we can light up social media with awareness about Rare Disease Day!