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
Results for "light up for rare"
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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
The patient group’s purpose is to improve the lives of patients, parents and carers of all ages, in the United Kingdom and Ireland, who are… Continue reading PTEN UK and Ireland Patient Group
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!
