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Your questions, answered

Frequently Asked 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).

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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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