We fly like butterflies – Let’s sting like bees Rare Disease Day is just around the corner! As February 28 approaches, I have more and… Continue reading My rare world
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My name is Becky, I live in the UK, am married and my wonderful husband Carl and I have three children, Isabella (age four) Joshua… Continue reading Rare Role Model
I recall the day, almost six years ago, when I observed the liveliness of joy in one who paraded around in a pink frilly skirt,… Continue reading This Little Light of Mine
I have a rare disease that makes me very sensitive to cold, and not just the extremities like hands, feet, nose, ears. My body reacts… Continue reading My Odyssey With a Very Rare Disease
10 years ago ..a very special little boy was born,Zuhair …he stole my Heart and still has it in heaven ❤️. I am the sister… Continue reading Sometimes … superheroes live in the hearts of little children fighting big battles .
Hi, my name is Jayme and I am 26 years old. When I was born in 1996, my Mom along with Doctors knew there was… Continue reading Not Too Rare To Care
Do you know a young child or a family who is dealing with acceptance and making friends at school? Are you a pre-school or kindergarten… Continue reading School toolkit: explaining living with a rare disease to children and teenagers
Hi!! I’m Bella, a 16yo from CT, with a plethora of chronic illnesses. Growing up, I was always the kid out sick, but we never… Continue reading How Medical Gaslighting Nearly Took My Life
On 25 November at 2 PM (CET), the Rare Disease Day team is hosting a download materials webinar for your Rare Disease Day campaign! This… Continue reading Register for the #RareDiseaseDay Download Materials Webinar!