As the mom of a 16-year-old daughter with a rare disease, I’ve had to learn how to accommodate Grace’s limitations. Many daily activities became much harder after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). My goal is to make her life with LEMS as easy as possible, so I began researching how...
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It was a landmark day they never expected to celebrate. Tristan Hall’s family were told he would not reach his first birthday – so they were delighted when he not only surpassed that but is now the proud owner of his first tooth. The brave tot celebrated his birthday in...
New York, NY – Weill Cornell Medicine researchers and the TB Drug Accelerator have received two grants totaling $6.8 million from the Bill & Melinda Gates Foundation to study tuberculosis (TB) drug development. This effort will expediate finding new drug targets within the bacteria and identifying new lead compounds, two...
CHENGDU, China — Kicking off the New Year with remarkable achievements, Chengdu-based WestGene made a significant impact at the 3rd mRNA-Based Therapeutics Summit in Berlin, Germany. Renowned for her pivotal role in mRNA research, Dr. Xiangrong Song, co-founder and CEO of WestGene, presented the latest advances in the company’s oncology...
Rare diseases can’t wait. Rather than sit on the sidelines, many patients are taking the initiative to do what they can to accelerate the diagnostic process, improve understanding of their disease and spark research into potential therapies. The 2023 NEXT Report from nonprofit advocacy group, Global Genes, shares stories of...
WHITBY — It’s been only a year since Katie Sutherland lay in a hospital bed clinging to life, but the Whitby teen is getting ready to compete in an international sports competition. Katie, 16, underwent a double lung transplant last year and since then has been building her strength back...
WICKLOW town joined the global chain of lights celebrating Rare Disease Day
Josh Bigham was saved, not by fire and brimstone, but by flamebroiled cheeseburgers and Coldstone Creamery. He’s found heaven in the sugary goodness of rocky road ice cream, the hickory-smoked flavor of a perfectly grilled steak and the well-balanced blend of a sweet and spicy barbecue sauce. For 15 years,...
Dallas — Inside Kelly Eakin’s garage in suburban Maryland, two of the world’s smallest wheelchairs gather dust. Just a few years ago, these wheelchairs were in high demand. There was a constant waiting list of eight or nine young children with spinal muscular atrophy, or SMA, a devastating disease that...
Mumbai – A 38-year-old woman who fell off a train last week thought she was lucky to have survived the accident despite suffering severe head and neck injuries. Shalini had reasons to think so as her CT scan came out normal. However, little did she know that her injury would...