TOPIC: Advocacy, Featured News
Over the next few weeks, I will be driving across the country to meet with NORD members and Rare Action Network™ advocates in their community. All told, I will be traversing over 4,000 miles, and spending time in 10 different states (my full itinerary can be found below).
In preparing for the trip, my colleagues and friends have… Read More
TOPIC: Featured News
The mission of CLOVES Syndrome Community (CSC) is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. Its vision is to have an improved quality of life for people with CLOVES syndrome.
1.) What does it mean to you personally to be a patient organization serving the rare community?
TOPIC: Uncategorized
The NORD Research Grant Program provides seed-money grants to academic scientists for scientific and/or clinical research. The hope is that these studies will ultimately lead to new diagnostics, treatments, and/or cures for rare diseases. NORD’s program provides grants for the study of diseases for which there are few other sources of funding. Grants provided through the NORD program are… Read More
TOPIC: Advocacy
Washington, D.C., July 30, 2015 – The National Organization for Rare Disorders (NORD) has filed an amicus brief in the D.C. Circuit of the U.S. Court of Appeals, stating that a recent Food and Drug Administration (FDA) decision has the potential to impede the development of new treatments to help patients with rare diseases. NORD is the leading… Read More
TOPIC: Advocacy, Featured News
Greetings from Oklahoma,
The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, it felt like I was on that very road. Absolute nothingness for miles in every direction.
So far the… Read More
