Rare Disease Day is Today......February 28th
I read about this on my friend Michele's Facebook page this morning. She says "A disease isn't rare if it's happening to you. Visit miracle4will.com and support my nephew's cure!" Will Luthcke suffers from a fatal genetic disorder named Sanfilippo Syndrome. There is currently no cure or treatment. I've written about Will before.....links to those posts are here and here.
Rare Disease Day is an annual event to inform and remind the public, health professionals and policy makers that research is needed to give hope to patients and their families that have been diagnosed with a rare disease. Coordinated by EURORDIS and National Alliances of Patient Organisations, the day is recognized in countries around the globe as they partner to search for ways to improve the lives of those affected by rare diseases.
What is the definition of a rare disease? 80% of rare diseases are genetic in origin and 75% of those affected are children. Rare diseases have no known cure. They can be chronic, degenerating and life-threatening. 30% will die before they are five years old. Click here for more info about rare diseases and what can be done to help.
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