Advocacy Creates Change

Rare diseases need people willing to speak up.

Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, and communities better understand this ultra-rare disease.

You don’t have to be an expert to be an advocate.

Your voice can make a difference.

Take Action: Share one thing you’ve learned about ECD this month with someone who didn’t know about the disease before.

Help one more person #KnowECD.