The DADA2 Foundation Timeline

Get to know us and how the Foundation began - just months after the disease was discovered. Without collaboration among the world's leading researchers and physicians, as well as determined patients, we might not be on our way to a cure.


First DADA2 Papers Published in NEJM

DADA2 is discovered in 2014 when groups in NIH in the U.S. and in Jerusalem, Israel, simultaneously identify – for the first time in medical history – the deficiency of adenosine deaminase 2 (DADA2), both publishing in New England Journal of Medicine.

NIH Cohort Successfully Treated with TNF Inhibitors

Learning from the Israeli physicians who discovered TNF inhibitors as a successful treatment to desperately save one life, and then continue to treat patients, US-based NIH physicians begin administering TNF inhibitors to their first cohort of patients, finding similar results.

Initial Diagnoses End Diagnostic Journey

Chambers family receives their diagnosis, and begins work to gather international engagement around DADA2. Works with NIH to connect as many researchers who were studying DADA2 as possible. Watch the video above with, which told the Chambers’s story through a partnership with the RareIs project.

Informal Gathering on DADA2 at CIS in Houston

conference table

Dr. Chambers organizes meeting of just seven immunologists and related specialists while they all gathered at the Clinical Immunology Society meeting in Houston. They discussed known data on DADA2 and formulated questions around uncertainties. At this meeting, it was determined a larger meeting could happen on the disease.


DADA2 Foundation Officially Formed

DADA2 Foundation Officially Formed

By Spring 2016, the DADA2 Foundation was officially incorporated as a 501(c)(3) in the US.

1st International Conference Hosted by DADA2 Foundation

The Inaugural  International Conference of DADA2 is held in Bethesda, Maryland, near Washington, D.C., USA. In attendance were 136 clinicians/researchers from 16 countries as well as 69 patients & family members from 6 countries attend. This is perhaps the fastest time from disease discovery to global collaboration of any disease in literature. Further, during this meeting, we discovered that bone marrow phenotype is a presentation of DADA2. Watch all of the conference videos here.


Published Papers on DADA2 Increases

Paper publishing on DADA2 picks up, including immunodeficiency and bone marrow transplant.   Papers continue to be published nearly every month since that time.


ADA2 Name adopted

HUGO Gene Nomenclature agreed to change CECR1 to the ADA2 gene and approved the name “Adenosine Deaminase 2”.  Pictured above is the ADA2 protein scientific ribbon model.

ICD-10 Code Established in Record Time

ICD 10

ICD-10 Code for  medical records and  insurance coverage applied for, considered and approved. This is perhaps the fastest time from disease discovery to ICD-10 code and is currently actively used.

2nd International Conference

2nd International Conference

Second International Conference on DADA2 is held, increasing attendance to 123 physicians & researchers from 25 countries & 93 patients and family members from nearly 13 countries attend. In vitro studies that began as a result of this conference led researchers to realize the potential for gene therapy. Watch all of the Conference Videos on YouTube: