You’re not facing
Cornelia de Lange
alone
A Cornelia de Lange diagnosis can feel overwhelming. We’re a research foundation with a single focus — the science to treat it. Here you’ll find the family organizations who can support you day to day, and the research you can help move forward.
A foundation focused on the science
However you found us, welcome. We’re a nonprofit working toward the first targeted treatment for Cornelia de Lange syndrome and its most common cause, the NIPBL gene — researchers, clinicians, and funders who refuse to accept that “manage it” is the end of the story.
We’re not a day-to-day support group — but we work alongside the CdLS family organizations who are, and we’ll always point you to them.
Practical tools for families
Practical resources you can bring to appointments.
Growth charts
Track growth over time with reference charts you can share with your care team.
Visit siteDevelopmental milestones
A skills chart to follow development at your child’s own pace, one milestone at a time.
Download PDFA primer for pediatricians
What a general practitioner needs to know about CdLS in three pages. Print it and hand it over at the first appointment.
Download PDFSurgery & anesthesia considerations
Airway, anesthesia, and pain-response cautions on a single sheet. Keep a copy in the bag for the appointment you didn’t plan.
Download PDFFind your community
We’re a treatment-focused foundation — so the day-to-day connections, events and parent-to-parent advice come from the national Cornelia de Lange (CdLS) organizations below. Find the one closest to you.
These are independent organizations with their own teams and missions. We’re proud to point you to them.
CdLS Foundation
The national organization for families across the US and Canada — parent-to-parent support, care information, and family conferences. If you’re in North America, start here.
CdLS World — World Federation of Support Groups
Visit site United Kingdom & IrelandCdLS Foundation UK & Ireland
Visit site FranceAFSCDL — Syndrome de Cornelia de Lange
Visit site GermanyArbeitskreis Cornelia de Lange-Syndrom e.V.
Visit site ItalyA.N.CDL — Associazione Nazionale di Volontariato Cornelia de Lange
Visit site SpainAESCdL — Asociación Española del Síndrome Cornelia de Lange
Visit site Netherlands & BelgiumVereniging Cornelia de Lange Syndroom
Visit site Australia & New ZealandCdLS Australasia
Visit siteHelp us reach the first treatment
Science moves faster when families push it. Three ways to help, starting today.
- 1
-
2
Work with us
We’re actively looking for more people to join our effort. If you’re a caregiver, clinician, researcher or anyone who wants to do more, reach out to us.
shivika@nipbl.org -
3
Know someone with Cornelia de Lange syndrome?
Research is coming. Let us find you.
If you have a loved one with a pathogenic NIPBL variant, let us find you. Add their variant and we'll reach out when a study or drug trial opens that they may be eligible for. Confidential and takes two minutes.
Join the research listAbout two minutes. Private, never sold, and it commits you to nothing.