By Robert Ostrea As an involuntary member of the rare disease community (my youngest daughter, Hannah, was diagnosed with a rare, genetic disease shortly after birth), I have been fairly active in participating in events and organizations geared towards raising awareness of as well as educating people in positions of power (elected officials) about the…
21st Century Cures
#CuresNow has passed! 21st Century Cures Act
Happy Tears today following the overwhelmingly positive vote in the Senate today for 21st Century Cures! Our family has worked with hundreds of rare disease advocates all over the U.S. to create HOPE for our rare disease community. Thank you U.S. Senator Dean Heller and Senator Harry Reid for putting our Nevada rare children’s needs…
#CuresNOW – United Rare Disease Day of Action
* ACTION ALERT * PICK UP THE PHONE TODAY!! Every single person reading this can help us provide HOPE for children diagnosed with life-limiting rare diseases! #CuresNOW Today, we are calling on patients across America to take action for a United Rare Disease Day of Action. Our goal is to ensure that Congress passes the…