I was a mother of two teen girls and I drove a mini van full of teenagers to the mall frequently. We went to Swim… Continue reading I Have CRPS and I am Aware that I am RARE
I was a mother of two teen girls and I drove a mini van full of teenagers to the mall frequently. We went to Swim… Continue reading I Have CRPS and I am Aware that I am RARE
My life changed in an instant. 32 years old, mom to 5 kids aged 2-13, business owner, married mom. Our newspaper business had just gotten… Continue reading I am a Zebra and then Rare Disease Community is My Herd
Sometimes, just sometimes, I find writing helps. But I find it difficult writing about illness. And the thought of subsequently publishing it gives me chills,… Continue reading Rising up against Cryo
The official Rare Disease Day 2018 video launches today and is already available in 24 languages, kicking off the international patient-led movement that puts rare… Continue reading Out Now! Rare Disease Day 2018 video is here!
MY STORY: In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was… Continue reading My Ledderhose/Dupuytren’s Disease Story
My name is Catriona Humphrey and I have been a parent to four beautiful children for almost twenty years; however, these last few months have… Continue reading Family Facing 2nd Rare Disease Fights For The Life of Their Youngest
Hi, T hope you can understand what my journey has been over the past 7 years of being disabled from my Diseases. I am now… Continue reading NeuromyelitisOptica & my other Rare Diseases
I’ve never been a “healthy” person. All my life I struggled with health issues. I grew up in an area of the United States called… Continue reading A Soup of Rare Diseases
The Rare Disease Day 2017 official video is OUT NOW! Share this video on social media and with your friends and family to help spread… Continue reading Rare Disease Day 2017 Video: OUT NOW