In the world of rare diseases, every patient counts—literally. Building a strong patient registry is critical not just for connecting families, but also for driving research forward. By gathering information about individuals with DAND, we can help clinicians and researchers better understand this condition, identify patterns, and push for more studies and treatments.

Why join the DAND Patient Census?

  1. Advance Research - De-identified patient data helps researchers recognize trends, improve diagnostics, and explore potential treatments.

  2. Stay Informed - Get updates on the latest research, clinical studies, and support programs.

  3. Find Your Community - Connect with families who share your specific genetic variant, similar symptoms and experiences, and location for opportunities to connect in–person.