Thank you for your interest in raising awareness for Rare Disease Day! Taking place every year on the last day of February, Rare Disease Day… Continue reading Join Rare Disease Day as a company
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We are a student-led/run club on Cal Poly State University San Luis Obispo’s campus planning an event on 2/28, from 11 am to 1 pm.… Continue reading Cal Poly Genetic Counseling Student Interest Group
Today is Rare Disease Day! We are inviting everyone to share their colours and raise awareness for the 300 million people living with a rare… Continue reading Press Release: Mark Rare Disease Day 2023
As someone who lives with a number of rare conditions, including Nail Patella Syndrome, Idiopathic Intracranial Hypertension, Nervus Intermedius Neuralgia, Glossopharyngeal Neuralgia, and Trigeminal Neuralgia,… Continue reading My journey with Nail Patella Syndrome and rare neurological conditions
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
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 .