When my son was born, Â they toom him away from me and my husband and sent him to the special children hospital nicu ward as… Continue reading My Rare son, my light my moon my life.
Results for "light up for rare"
We found 426 results for your search.
My story started while I was vacationing in Thailand, visiting my friend Peter. Â Â I was 26 years old and it was my first trip all… Continue reading Rare Disease on Vacation
Here is my account of living with a rare disease; Pure Autonomic Failure where my bladder and bowel failed to function normally. Now I have… Continue reading What It Is Like Having a Rare Disease
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