February 2026 – Join the DADA2 Foundation to Honor Rare Disease Day
In Honor of Rare Disease Day
February 28 is Rare Disease Day. It’s a day that we honor – globally – the bravery, persistence, and curiosity of everyone whose life is touched by a rare disease.
DADA2 is fortunate to be one disease that is not a common diagnosis but is supported by a huge community of researchers around the globe who are dedicated to learning more about it. It is core to our mission that we collaborate with these labs – like Dr. Kelly Brown’s lab that we featured this week – and connect with as many as possible to continue to find treatments and cures.
Another part of our mission is to connect with patients, and I was thrilled to do that a few weeks ago when 20+ patients from eight countries gathered online to hear an update on the Foundation and an update from Dr. Pui Lee of Boston Children’s Hospital, who treats many DADA2 patients. A recap of our time together is included in this newsletter so that you can catch up on the latest. Most importantly, I just have to say how much I enjoyed our time together, and I look forward to meeting more frequently.
It takes a lot of work and a small but mighty staff to share these newsletters, communicate regularly with researchers, physicians, and patients, and pursue partnerships that can result in better diagnosis and treatments…hopefully, one day, a cure. We invite you to support our mission with a gift on Rare Disease Day. Every amount matters and you can give in many global currencies: www.dada2.org/donate.
DONATE TODAY!
Chip Chambers, M.D.
Founder & President, DADA2 Foundation
Check out more on their stories on our social media properties, especially Facebook!
ADA2 Enzymatic Test now Available in U.S.
For more than a decade, running an enzyme level test on ADA2 only occurred in a few labs around the world, often only as part of a research study. Today, that number has increased thanks to the work of Dr. Roshini Abraham at Nationwide Children’s Hospital in Ohio, U.S. A long-time researcher and clinician, Dr. Abraham runs a lab that has studied DADA2 from nearly the beginning.
Through her team’s research, they were inspired to create a new test that can check ADA2 enzyme levels in the blood. It is a laboratory developed test and is approved by the Clinical Laboratory Improvement Amendments – or CLIA – in the U.S. Thanks to Dr. Abraham’s work, physicians can now order a test, beginning that process here. For U.S. patients, this will shorten the time to getting an accurate level. We are grateful to have partnered with Dr. Abraham across her work to study ADA2 and look forward to more to come out of her lab in the future!
Highlights from February Patient Call
On February 14, 20+ patients gathered from around the world to brush up on the latest news with the Foundation and also hear about latest care tips from Dr. Pui Lee of Boston Children’s Hospital. During the hour together, patients met the DADA2 staff members who support the Foundation’s work, heard a presentation from Dr. Lee, and asked questions. We summarized those questions so that the entire DADA2 community could learn. Take a look at the bottom of our Patient Resources Page on our website! We hope to host more patient gatherings in the future, so if you missed this one, please don’t hesitate to reach out!
Orphanet Updates Definition of DADA2
Accurate information is critical to growing awareness of a rare disease like DADA2. We are grateful that Orphanet – a website trusted by doctors, researchers, and patients to learn about rare diseases – accepted our updated definition of DADA2. This site feeds other rare disease directories so we are thrilled that updated information will be disseminated to other sites as well. This increases the understanding on a wide scale of the disease. Read it here!
We want to do more to increase awareness. If you know where we should be updating definitions so doctors can identify DADA2, email us. We are happy to submit accurate information.
Latest Research
Deficiency of adenosine deaminase 2: Myriad faces in a single family. Pediatric allergy and immunology: official publication of the European Society of Pediatric Allergy and Immunology. February 3, 2026.
