You don’t have to be a scientist or a doctor to make an impact. You can help by: Sharing information about ECD. Supporting ECD Global Alliance. Listening to patient stories. Encouraging others to learn about rare diseases. Speaking up for those living with ECD....
The 2025 Get Ready to Run, Walk & Roll for Hope Fun Run has officially come to a close, and we are absolutely thrilled to announce that we not only met our fundraising goal… we surpassed it! Thanks to the generosity, enthusiasm, and heart of our incredible...
We’re standing just shy of the finish line—$24,017.57 raised of our $25,000 goal. That means we’re only $982.43 away from achieving something powerful. This campaign has always been about more than a number. It’s about the strength of our community. The determination...
