Today is #RareDiseaseDay.
My heart has changed so much since her diagnosis and I want to make a big impact. I want to make a change that is not just talk but is actually doable.
Stay tuned for those details to roll out soon. (If you are interested in helping let me know).
So far I have just been doing my best to reach out to families who are dealing with rare diseases and teach them how they can be the best advocate for their children.
I love these two statistical photos and my mission is hidden in one of the facts.
*Rare Disease affect more people than Aids and Cancer Combined!
*95% of Rare Diseases do not have an approved FDA approved Drug treatment
#CareAboutRare #WRDD2017 #RareDiseaseDay
xo desiree
Life is RADD 