On Monday, April 18, seven members of NORD’s Running for Rare team stretched their legs and put their sneakers to the pavement to take on the Boston Marathon! During the race, NORD staff members Jaime Pacheco, Ed Neilan, Julie Manus, Amanda Thomas and 36 individuals were present and could be… Read More
While in uterus, Zane had an abnormally large bladder that did not drain properly; however, no diagnosis was given at that time. The doctors monitored Zane closely starting around 20 weeks. He was suspected of having megacystis microcolon intestinal hypoperistalsis syndrome (MMIHS) in December of 2012 at six days old…. Read More
Washington, DC – The National Organization for Rare Disorders® (NORD) was named an Official Charity Partner for the 2021 TCS New York City Marathon, taking place on November 7. This year serves as the 50th celebratory running of the marathon. NORD will be among the more than 400 official charity partners… Read More
Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis… 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
