Understanding DEAF1
Our Mission, Vision, and Priorities
DAND (DEAF1-Associated Neurodevelopmental Disorder) is a disease characterized by a mutation of the DEAF1 gene. Although the types of mutations and symptoms expressed vary from person-to-person, autism spectrum disorder, intellectual disability, behavioral issues, and communication issues are all extremely common.
There are less than 150 known cases of DAND worldwide, which has made securing funding for research extremely difficult. Rare diseases are often overlooked in favor of diseases that affect a larger number of people.
Join Our Community
Together, We're Stronger
Many of the families affected by DAND have joined together via a Facebook group, and we have decided to take the fundraising efforts into our own hands. There is a dedicated team of researchers at Southern Illinois University whose primary focus is studying DAND, and our group’s aim is to support their research in any way we can.
With 160+ members and counting, our (private) Facebook group is a growing community of parents, siblings, families, and friends touched by DAND in some way. We document events from our daily lives, sharing stories, asking questions, and showing up for one another.
Want to Get Involved?
Get Started Today
Be it through organizing, financial contributions, or ideas for research contracts, there’s no better time to lend your support. Awareness is everything when it comes to ultra rare genetic disorders. A little help can go a long way.