News

A Sterling family is seeking community support after a "perfectly normal day" changed their lives forever. Jeremy Hunter suffered a severe stroke May 20 that resulted in emergency surgery to remove a ...
Patients with rare diseases are increasingly working to find and fund their own cures. But should they have to?
Michael Armellino first heard of Williams syndrome when his partner’s granddaughter, Maelyn, was born with the rare genetic condition 10 years ago. A simple internet search laid out that she could be ...
Bruce Leuchter, CEO, Neurvati, discusses the vital role of public participation in healthcare policy, highlighting how ...
June is Alzheimer's and Brain Awareness Month. Colbie Schueneman, 6, is sharing her story with KIF1A, also known as KAND.
When nerve cells don’t end up in the right place during brain development, it can cause periventricular heterotopia —a ...
Every year, thousands of infants in America are diagnosed with devastating genetic diseases through newborn screenings. The ...
That’s why Worldwide Clinical Trials was committed to ensuring the rare disease community still had a space to share knowledge, resources, and support on Rare Disease Day 2025. When the FDA announced ...
Recently, Day-Salvatore, her team and Maimon recognized Rare Disease Day on Feb. 28. There were lectures, awareness campaigns, matching t-shirts and lights adorning the pathway between buildings ...
Silvestri said it also important for doctors to question every diagnosis, especially their own. Linda K. Ramsey, an administrator in the Department of Pediatrics, has been an ambassador for the United ...