Washington, DC, November 10, 2020—This year, in conjunction with its rare disease community partners, the National Organization for Rare Disorders (NORD®) continued to drive research and innovation through the IAMRARE™ registry program. Having launched its first study in 2014, today IAMRARE
Washington, DC, 10/1/2020 — Today, the National Organization for Rare Disorders (NORD®) opened registration for a natural history study on metachromatic leukodystrophy (MLD), a lethal rare disease currently without an FDA–approved treatment. NORD’s Natural
I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders and, admittedly, the first time I considered going. I had the impression that NORD was a policy and advocacy… Read More
Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, as well as behavior. Deborah felt helpless as she observed the struggles that her son, daughter-in-law and Cori… Read More
In 2009, Sociology professor Maria Kefalas, Ph.D., and her husband welcomed their fourth child to the world. They named her Calliope Joy (Cal for short) to symbolize… Read More
