#RareDiseaseDay is a time to raise awareness of the issues facing over 300 million people living with rare diseases worldwide. At Rare Patient Voice, we are committed to bringing the … READ MORE
Weekly Warrior: Meet Brittany
“Hi, I’m Brittany @brittanyydevan. I’m 29 years old and have been chronically ill for a little over 10 years. I have Crohn’s disease, GERD, chronic gastritis and esophagitis, gastroparesis, … READ MORE
Road to Rare Disease Day: Vaila and EJ’s Story
“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
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