“I’m Vaila, mum of EJ (11) and EW (8) and we live in the UK. EJ is a sensory superstar and loves movement, music and experiencing nature. She also has … READ MORE
Road to Rare Disease Day: Tara’s Story
“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
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