TOPIC: Featured News, Advocacy, Get Involved
Recently, NORD was happy to receive a Facebook message from a young woman named Angelia Benson. She expressed interest in using NORD’s logo in a parade as part of her competition to become Miss Utah. We were thrilled to learn that Angelia, who is the reigning Miss Iron County Utah, was interested in rare diseases and in using her… Read More
TOPIC: Featured News, Advocacy
Howdy from Houston,
The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways and side streets.” About an hour into this bad idea I lost cell signal and had no idea… Read More
TOPIC: Featured News, Advocacy
Greetings from Tallahassee,
As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules prevented our advocate and me from posting a few days ago).
I like Tallahassee, it is one of… Read More
TOPIC: Featured News
The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham’s disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. The Lymphangiomatosis & Gorham’s Disease (LGD) Alliance is a non-profit foundation dedicated to patient support, advocacy, and the finding of effective treatments and cures for those affected… Read More
TOPIC: Featured News, Advocacy
Greetings from Atlanta, Georgia.
I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force (a NORD member organization). As a NORD State Ambassador, Beth is hoping to advance provider education for Syringomyelia and all… Read More
