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Reach the community.

Share your story. Ask a question. Support the work. Every message helps build a clearer map for the families still searching.

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Ways to support

Share your story

Add your family's voice. Stories help the next family feel less alone.

Donate

Funds go to natural-history research, registry infrastructure, and family supports.

Refer a clinician

If your geneticist or neurologist would benefit from contact, send them our way.

Frequently asked

Questions, answered.

I think my child might have a DLL1 variant. What should I do first?+
Ask your geneticist about trio whole exome sequencing if it has not been done. If WES has already been done and was reported as negative, ask whether DLL1 was specifically reviewed — it is sometimes missed when the indication does not flag the Notch pathway.
Is there a registry?+
We are working with research partners to build a DLL1-specific natural-history registry. If you are interested in participating, send us a note via the form.
How can clinicians get in touch?+
Use the form below or write directly to the team. We are happy to consult on phenotype, variant interpretation, or next steps in the diagnostic pathway.
Are you a registered nonprofit?+
DLL1 United is in formation as a 501(c)(3). Until that designation is finalised, contributions are held by a fiscal sponsor partner.

Together, we make a rare diagnosis a little less lonely.