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
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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!
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