A rare disease diagnosis can often take many people by surprise. The diagnostic process can be long and tough; managing symptoms is often no less easy. Ellen Inouye discovered this…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
In March 2023, 14-year-old Rylie Erbacher visited Washington, D.C. for a one-of-a-kind experience. The teen, who has spinal muscular atrophy (SMA) type 2, was one of just 10 people nationally…
We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United Foundation. Its latest stop was…
Ready for a dose of inspiration to get you through the Monday after a long weekend? We got you covered! Meet Alex Biagi from Colorado - who in 2008 was diagnosed…
Editor's Note: Kara LaFrance is an artist and graphic designer fighting acromegaly. She had a late diagnosis at 28 which led to surgery, radiation and ongoing medication therapy. Pain is a…
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