There is a well-subscribed Emery-Dreifuss facebook group for patients and families affected by EDMD that shares medical and broader experiences.

Patient registries are absolutely critical for development of treatments or cures. Please complete patient registrations as applicable to your EDMD type:

• Patient registry of Dr. Howard Worman at Columbia University. All EDMD patients should do this.

• LAMIN: The LMNA Mutation Registry of North America. All North-American patients with Type 2 or Type 3 EDMD (LMNA mutations) should do this in addition to completing Dr. Worman’s registration.

The NIH has a primer that explains why patient registries are critical to treatment development, especially for rare diseases. Patient registries only work if patients or their parents/guardians complete them. Please help everyone affected by EDMD by registering today!