• What is DAND?

    DAND represents two syndromes collectively described as DEAF1 Associated Neurodevelopmental Disorders (DAND). They are variants in the DEAF1 gene. This gene is extremely important as it regulates other genes in the brain and central nervous system. Intellectual disability, seizures, impacted speech, gait (walking) disturbances, movement disorders, anxiety, autistic behaviors and white brain matter disease are all common symptoms of mutations in this gene. Over the last 20+ years, we have identified just over 100 cases in the world using exome sequencing genetic tests. The two syndromes are VSVS syndrome which are de novo cases (new to families/not inherited) and the second syndrome are cases that have been inherited.

  • Providing a sense of community

    The mission of this group is to provide a safe place for families to share stories, successful treatments, difficulties and ultimately advocate for new research and treatment options for our precious children.

  • Heightening public awareness

    Greater awareness leads to funding, which is used to advance research for DAND syndromes. The FDA considers rare disorders 200,000 individuals in the U.S., so disorders like DAND don’t get attention or resources. We can change that!


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How You Can Help

Spread the word. Awareness is so important when you are working with an ultra rare disease. Check with your company about sponsoring an orphan disease, and see if they match donations. If you are able to donate, please contribute what you can. If you aren’t able to make a monetary donation, click on the link below to look through our fundraising partners to see if there is a retailer or restaurant that you normally visit that you can link through us.

Reach out! If you have any referrals or ideas for research contacts, families that might need help, ways to raise awareness or fundraising, please click the link below and drop us a note!

Actionable Information

Answers to Your Questions and More

Due to the rarity of DAND, part of our mission is to provide answers in an area where information is scarce.

Can’t find what you’re looking for? Write us a message. If you prefer, we also have an anonymous form where you can ask us anything you’d like. It’s up to you whether you would like us to answer you directly. Otherwise, we’ll address your question on our FAQ page.

A Space to Share

Community When it's Needed Most

With almost 200 members and growing, the mission of our private Facebook group is to provide a safe place for families to share stories, successful treatments, difficulties and ultimately advocate for new research and treatment options for our precious children.

There, you’ll find parents, siblings, family members, and friends who are all touched by DAND in various ways. Don’t hesitate to join—we’re stronger together.

Any questions?

DEAF1 Associated Neurodevelopmental Disorders (DAND).

Extremely rare. One of the rarest diseases in the world. There are only dozens of known cases in over 20 years. Of those most mutations are still unique.

One DAND syndrome is hereditary and one is de novo (new to families). The new cases are more common. Symptoms are different for the inherited syndrome. Development can be more typical at first which is why we may not be seeing as many cases yet.

Deformed epidermal autoregulatory factor-1 (DEAF1), a transcription factor essential for central nervous system and early embryonic development.

Yes, our children face many health problems. Most of our children spend many weeks in the hospital every year with serious infections, or seizures that are uncontrollable.

Some of our children have been on life support and several have white brain matter disease which slowly takes over your brain (dementia, but in children).


Support the DAND Foundation

Please help us improve the lives of these amazing children. When you give to The DAND Foundation, you are funding breakthrough research and treatment for patients with DAND and helping to support their critical medical services and programs. Thank you for donating today and joining our fight!

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