Rare Disease Day 2024

Rare Disease Day was February 29th, a very special rare day! We asked our community to help us build EHE awareness by submitting their EHE stories so that we could share them on our social media platforms and website to shine a light on EHE and rare diseases!

Throughout the month, we shared the stories of three EHE patients, each navigating this disease in their own way. Their stories are included on our Faces of EHE page. We also launched our national awareness and fundraising event, the 2024 EHE Fun Run & Walk. By registering and receiving an EHE “Just live.” T-shirt, participants are spreading awareness each time they wear that shirt. Our community hosts events all over the country allowing EHE awareness to spread far and wide. 

Rare Disease Day is the globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Collectively, we aim to change and improve the lives of the 300 million rare disease patients worldwide.