Connect

Reach the community.

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

Send a message

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.
The single most leveraged thing you can do

Join the DLL1 family registry.

A voluntary, confidential database of families connected by variants in DLL1. Your data, your consent, your control. The dataset that lets researchers ask better questions — and the way families find each other.

Stored securely
Encrypted, access-controlled. Identifying information is segregated from clinical detail.
Never sold or shared without consent
Research collaborations are individually evaluated and require your specific opt-in.
You control what's shared
Skip any field. Decide if you want family matching or research updates. None of it is all-or-nothing.
Withdraw any time
One email and your entry is removed the same day. No questions, no friction.
Open the registry intake →10–15 minutes · withdraw any time
In their own words

Stories from the DLL1 community.

Every family's path through this disorder is its own. These reflections — shared with permission — are part of a growing archive. If you'd like to add your voice, use the form above.

The geneticist said the name twice — DLL1 — and I asked her to spell it out. By the time we got to the car I was already searching it on my phone. There was almost nothing. That night I started writing down everything I knew about my child.

A parent · early years

When the geneticist said 'DLL1,' I went home and typed it into a search bar that had never heard of it either. We were starting from nothing. We're not starting from nothing anymore.

A parent · on receiving the diagnosis

For five years, every specialist had a name for one symptom. Nobody had a name for our son. Then DLL1 arrived — and so did a community.

A founding family · United States

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