Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
Our MED13L Foundation will celebrate on Rare Disease Day by wearing our MED13L gear (Buy Apparel), sharing our stories on social media and participating in the global chain of lights.
Share your colors and participate in the Rare Disease Day global chain of lights! Whether you are lighting up your home or a monument in your city, everyone can get involved.
#ShowYourRare is the interactive social media campaign for Rare Disease Day. You can get involved during the month of February by painting your face and sharing a photo using the hashtag #ShowYourRare in solidarity with people across the world who are living with a rare disease.
Share your story in the Rare-X natural history database. Together, let's illuminate the path to understanding and advancing research for MED13L Related Neurodevelopmental Disabilities.
Our goal is 100% community participation for a brighter future for our children.