Rare Disease Day

Today is National Rare Disease Day. It's a cause that's near and dear to our hearts for obvious reasons

• Nearly 30 million Americans have a "rare" disease.
• Diseases are considered rare if they affect fewer than 200,000 people
• There are nearly 7,000 rare diseases identified by the National Institutes of Health, FDA-approved treatments only exist for 200 of them

Please consider heading over to www.rarediseaseday.org to utilize their handy-dandy tool to notify your elected officials about Rare Disease Day. You can also go straight to the Handprints on the Hill initiative to send a message to your elected officials.

Thank you! We hope that one day parents of children diagnosed with Sanfilippo syndrome and other rare diseases will not have to hear the words "there are no treatment options available."