Rare Disease Day USAAlone we are Rare. Together we are Strong.
Next Monday, February 28, is Rare Disease Day. I think it’s a great project to be involved with because raising awareness of rare disorders is so important and by working together with multiple organizations we can work towards increased recognition and awareness of the many rare disorders (some even rarer than Moebius!) that NORD serves.
A project of Rare Disease Day is Wear That You Care/Jeans for Genes… basically wearing jeans in support of more awareness of genes! Something great that you can do even if you can’t attend another event or fundraiser. There is also a video project collecting stories of people with rare disorders and their families.
Speaking of awareness and education, I’ll be attending the Genetic Diseases of Children Conference on a scholarship awarded to families and people effected by genetic disorders. There are a bunch of interesting panels and presentations. Rick Guidotti, who will be the 2012 Closing Speaker for the Moebius Syndrome Conference, will be presenting. I’ll definitely post anything I learn that I think would be valuable to the Moebius syndrome community.