TOPIC: Advocacy, Featured News
Greetings from Salt Lake City (Day 2),
As promised, I’m happy to introduce you to NORD’s State Ambassador for Utah, Gina Szajnuk. Say hello, Gina:
“I am the mother of three children with an undiagnosed genetic dysfunction. I am also undiagnosed. Our family lives in a diagnostic odyssey times four…. Read More
TOPIC: Featured News
Today, Rare Disease Report®, the flagship property of Rare Disease Communications® (RDC), a growing healthcare communications and media company, and the National Organization for Rare Disorders (NORD)®, the leading, independent nonprofit organization committed to the identification, treatment and cure of rare diseases, announced a new editorial collaboration.
The collaboration will f
ocus… Read More
TOPIC: Advocacy, Featured News
Greetings from Salt Lake City,
This is part 1 of 2 of two posts on SLC. Tomorrow I will post on our State Ambassador, Gina Szajnuk. Today, I’m happy to share a bit about another local advocate who is doing great work on behalf of the rare disease community in Utah…. Read More
TOPIC: Advocacy
NORD joined a coalition of nonprofit advocacy organizations, technology developers and patient interest groups, led by the Center for Responsible Science (CRS), in calling for the FDA to update regulations that govern preclinical drug and device development. The coalition filed an FDA Citizen Petition with the aim to streamline drug and device development to ensure safer and more… Read More
TOPIC: Advocacy, Featured News
Greetings from Denver,
As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 miles later I made it to Denver. It was somewhat of a tedious drive with nothing much to gaze… Read More
