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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.
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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).