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
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!
Apple Homecare Medical Supply provides home medical equipment and disposable supplies to patients across Texas, with a focus on respiratory and enteral supplies in a… Continue reading Apple Homecare Medical Supply
PIP-UK works hard to raise awareness of Poland Syndrome, create a community of people living with the syndrome, a global patient register and specialised paediatric… Continue reading PIP-UK Poland Syndrome Support
Our son, Luke, was diagnosed with epilepsy when he was 2 and a half years old. As any parent with a child with epilepsy knows… Continue reading Never Giving Up Hope
I lost my voice due to a an extremely painful Rare Disease called Eagle Syndrome from one day to the next for years. It has… Continue reading Losing my voice and speaking up
Hi, I’m Kim from Manipur, India. Growing up I was sensitive to sunlight and camera flash light. At the same time I had quite low… Continue reading Rare disease chose me but I choose Living Hope