The ground wobbles a little when your newborn is diagnosed with a rare disease. It threatens to swallow you whole when you learn a NICU attending has to distribute two stapled pages to each of his staff summarizing your daughter’s condition. They had never before treated a child with Hilde’s diagnosis, let alone...
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MEDFORD, Mass. – Myrobalan Therapeutics, a biotechnology company developing potent, selective, and brain-penetrant oral small-molecule therapies to restore brain function, today announced a grant of over $850,000 from the National Multiple Sclerosis Society to support the preclinical and translational development of MRO-002, a G-protein-coupled receptor 17 (GPR17) antagonist, for the...
SAN DIEGO, Calif. — n-Lorem, a nonprofit foundation, has announced the dates for its second annual Nano-rare Patient Colloquium, which will be held Oct. 30 & 31 in Cambridge, Mass. The Nano-rare Patient Colloquium will bring together a Community of Care for Nano-rare that consists of treating physicians, industry leaders,...
North Carolina’s health care system has been unkind to Kay Swan and her family. Her husband suffers from kidney disease and her son was diagnosed with Wolfram syndrome, a rare genetic disorder that can cause diabetes, loss of vision and deafness. When Swan lost her job of 18 years, her...
MINNEAPOLIS — Every day, thousands of people with leukemia and other life-threatening diseases search the Be The Match Registry for a bone marrow match. To highlight the enormous need for more bone marrow donors, Be The Match(SM), the new name for the National Marrow Donor Program(R) Registry, kicks off its...
NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) today announced the addition of seven leading academic medical and research centers to its national NORD® Rare Disease Centers of Excellence Network, expanding collaboration to improve care and accelerate research for the more than 30 million Americans living with rare conditions. With...
National Organization for Rare Disorders (NORD®) Founder and past President Abbey S. Meyers, PhD, former U.S. Rep. Jaime Herrera Beutler of Washington State, New York Yankees centerfielder Bernie Williams, and pioneer clinical geneticist, Dr. Ada Hamosh, headline a group of rare disease champions who will be honored for their outstanding...
LINCOLN, Neb. (KOLN) -The annual Nebraska Football Road Race will return to an in-person format this summer with the family-friendly event set for Father’s Day on Sunday, June 20. The Nebraska Football Road Race presented by the Lincoln Track Club features the one-mile Fun Run set to begin at 8...
CORNWALL — Ryan Neiswender is as bright, perceptive and articulate as any 15-year-old could be. But for someone so intellectually aware, the soon-to-be Cedar Crest High School freshman appears to be profoundly oblivious to the fact that he’s been dealt a bad hand in life. That’s probably because when Neiswender...
SAN DIEGO, Calif. — Neurocrine Biosciences, Inc. (Nasdaq: NBIX) today announced the launch of WHAT THE C@H?!, an educational initiative that aims to close the gap in the need for helpful information about congenital adrenal hyperplasia (CAH) and acknowledges the frustrations and challenges experienced by the community in managing the condition. “We...