Posts tagged ‘National Organization for Rare Disorders (NORD)’
Running for Rare in the 2019 Boston Marathon
The 2019 Boston Marathon is on Monday, April 15th! Dr. Lorenzo Botto is partnering with RUN as his community partner! Hello! My name is Dr. Lorenzo Botto. I am running to help families with...
Governor Gary Herbert Declares Rare Disease Day in Utah on February 28th, 2019!
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases...
Upcoming RUN Involved Events and Projects
Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
RUN’s NBA Initiative: 30 Rare & Undiagnosed Children invited for NBA Utah Jazz Appearance
Thank you Boris Diaw for donating 60 tickets through the player donation program to RUN! RUN is currently looking for thirty rare and undiagnosed children to make an...
Rare Disease Week 2017
RUN will be doing the following during Rare Disease Week! Sunday, February 26, 2017: Milwaukee Bucks vs. Phoenix Suns 2:30 PM – Bradley Center Address: Bradley Center, 1001 N...