Patient Census
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.
Patient Census
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.
Help us get one step closer to treatments.
We are excited to be partnering with Simons Searchlight, an international research program focused on building a resource network of over 185 rare genetic neurodevelopmental disorders.
In order to create scientific breakthroughs for rare genetic neurodevelopmental disorders like DAND, families and scientists must come together, and Simons Searchlight’s mission is to shed light on these disorders by collecting high-quality, standardized natural history data and build strong partnerships between families, researchers, and patient advocacy communities.
By participating in Simons Searchlight’s registry, DAND families will be able to make meaningful contributions to better understand the DEAF1 gene.