Happy Friday! How's the the sweltering heat treating you all (if you're on the east coast of the US, that is)? Hoping you are keeping cool! In the meantime, check out…
Scotland’s Aaron Hunter went on Twitter to challenge the one and only Iron Man. He asked him for help with raising funds and awareness for rapid-onset obesity (RO) with hypothalamic dysregulation…
If you're a millennial, or if you are close to a millennial, or actually if you just have a social media presence at all, you have probably heard of the…
Abigail, a fifth grade student, originally took a trip to the Capitol to advocate for more research on tuberous sclerosis complex (TSC). The trip had unexpected results. As the Daily…
Researchers have just found some really exciting information that will be crucial in the development of idiopathic pulmonary fibrosis (IPF) treatments from here on out. Scientists at Northwestern Medicine have…
Great news for our friends in the the Gaucher community! The FDA and its counterpart across the pond, the European Medicines Agency (EMA), have outlined a new strategy to spur…
Being told your child has a rare disease is devastating. Then imagine being told that there’s absolutely nothing you can do about it. That was the reality for these parents,…
Over ten years ago, four close friends founded a charity called Angie’s Hope. One of the founders, Angie Lee, has been living with spinal muscular atrophy (SMA) since she was…
I recently got together with a sweet friend, who has a six-month-old. It was the first time we'd actually talked face-to-face since her daughter was born, and the first time…
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