Tuesday, February 21, 2017

Rare Disease Day February 28, 2017

What will you be doing on Rare Disease Day? There are activities all around the world. Find one near you: http://www.rarediseaseday.org/events/world

This year's theme is of particular interest to XLHers: "Research brings hope to patients living with rare diseases."

For those living in the U.S., the National Organization for Rare Disorders (NORD) is organizing state-level advocacy events, and could use your support. Find out about those organized events or learn how to organize your own here: http://rarediseaseday.us/events/advocacy-events/?utm_source=RDD17_email1&utm_medium=email#1474294382939-7c2f74aa-19892f0d-7a12

Board member Gin Jones will be on a panel at the event sponsored by Quinnipiac University's Frank Netter School of Medicine in North Haven, CT (a day early, on February 27). You can read more about it (and plan to attend if you're in the area) here: www.qu.edu/rarediseaseday 

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