“My name is Tara Zier and I was diagnosed with a rare disease called Stiff Person Syndrome in 2017. SPS is a progressive neurological condition with autoimmune features. People have … READ MORE
Weekly Warriors: Meet Stacey and Iris Ann
Hi, I’m Stacey, @thegutsychronie, and this is our beautiful daughter Iris Ann. We live on the beautiful island of Kauai and we love all things adventure. It’s scary to think … READ MORE
According to New Report, Today’s Diagnostic Journey for Patients Shows Progress – But Unevenly
Rare Patient Voice and MediFind Publish “The Long and Winding Road to Care: Today’s Journey to Diagnosis and Treatment for Patients Living with Complex Diseases, including Rare Diseases” TOWSON, MD, … READ MORE
Road to Rare Disease Day: Chelsea’s Story
“Hello my name is Chelsea Lawrence and I am a chronic illness and disabled tiktoker! I build awareness for rare disorders. Empower people to get through those tough days. Help … READ MORE
Road to Rare Disease Day: Bexton’s Story
Leading up to Rare Disease Day on February 28, we will be sharing personal stories from some of the amazing patients and caregivers who make up our Rare Patient Voice … READ MORE
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