January 2026 – Beginning our 10th Anniversary – JOIN US!
Beginning our 10th Anniversary
Dear DADA2 Community:
Ten years. For some, that’s how long you suffered with DADA2 symptoms before receiving a diagnosis. Decades of searching and treatment trials is certainly the case for my family.
BUT, ten years is also the milestone the Foundation has reached since our founding. Just two years after DADA2 was officially named a disease, the Foundation formed and held our first conference in 2016 and I cannot begin to tell you all that we have accomplished – together – as we move toward a cure.
This year, 2026, will be a banner year. I can feel it. We are in great pursuit of treatments, cures, and awareness efforts that will make it easier to diagnose and care for DADA2 patients in both the immediate and more long-term future. We continue to make progress on enzyme replacement therapy, PEG-ADA2. Point-of-care tests are in the works, genetic therapy is being explored, a patient registry and natural history study is getting closer to being launched, and we work every day to raise awareness for the disease so that physicians can spot it easier.
We will continue on this path and so much more, including a full celebration of our 10th anniversary in 2026. I look forward to sharing with you as the year goes along. Be sure to check our social media pages for updates and ways to be involved with Rare Disease Day promotion. We especially need the physicians in on this one! As always, reach out to us if you have questions or ideas on how we can be a resource to this community.
I look forward to celebrating our 10th Anniversary with you all year long!
Chip Chambers, M.D.
Founder & President, DADA2 Foundation
Kickoff: Join Us to Raise Awareness
Rare Disease Month kicks off next week: a global honoring of the unique road that rare disease patients, families, physicians, and researchers walk to solve some of the greatest medical mysteries.We are doing our part to raise awareness and raise funds so that rare diseases stay top of mind for those who can collaborate to cure them and bring quality of life to patients. Here’s how we need you to join us!
- If you are a patient, raise awareness & re-post our social media posts with your own story or comments! We’ll be sharing all month on Facebook, Twitter/X, and LinkedIn. Of course, in person conversations are excellent, too!
- Patients are also invited to raise funds for the DADA2 Foundation to fuel the initiatives Dr. Chambers discussed in his letter. Interested? Email kristen.hayner@dada2.org to get your own personal fundraising page or simply a few posts you can share.
- Physicians and researchers can share the posts we put on LinkedIn each week, highlighting rare disease stats and DADA2 information. We want to find more physicians in DADA2 specialties so that they can better spot possible patients! We need those we DO know, like you, to help us spread the word! Have another idea of how we can reach physicians? Let us know by contacting Mary.Makley@dada2.org.
This entire month leads up to Rare Disease Day on February 28, 2026. We hope you will take just one action this month to spread the word!
New Study Points to Why DADA2 Looks Different Among Patients
Why do some DADA2 patients experience significant inflammation while others experience low immune reaction?
While there is not one answer for that question, scientists in Belgium are discovering perhaps part of the reason. Dr. Jarne Beliën recently published a paper that summarized the results of recent work to examine blood samples from 11 DADA2 patients.
Beliën and his colleagues noticed an interesting pattern in these patients’ NK cells – which are a specific type of immune cell that helps protect the body from viral infections and cancer, and the body’s “first responders” to a viral infection. Instead of waiting to respond, DADA2 patients’ NK cells are always on high alert, as if the body is constantly under attack. However, they’re also not fully mature and aren’t as good at their job. To put it simply, NK cells in DADA2 patients are overstimulated, overworked, out of sync, and not as effective. This drives the body into a state of chronic inflammation while it still struggles to protect itself.
This research helps connect the dots between symptoms and what is happening in the immune system. It shows that DADA2 is not just an inflammatory disease; it is also a disease where parts of the immune system fail to develop and function normally. The first step to finding new treatments is not only cataloging the symptoms but also identifying what causes them.
By looking at different DADA2 patients, the study also found that not everyone with DADA2 has the exact same immune changes, which helps explain why symptoms and severity differ so much between DADA2 patients.
The study provides a rationale for continued investigation of the role of NK cells in driving the diverse spectrum of disease observed in DADA2. This study also highlights the essential role that rare disease patients play in the understanding of the underlying science of their condition.
Featured Published Articles on DADA2
DNK Engelstein, et al. The Journal of Rheumatology. January 15, 2026.
Pure Red Cell Aplasia Associated with ADA2 Gene Mutation
F Ahamed, et al. Indian Journal of Pediatrics. January 10, 2026.
M Sparchez, et al. Diagnostics. January 7, 2026.
Diagnostic Implications and Correlates of Plasma Adenosine Deaminase 2 Activity and ADA2 Variants
PY Lee, et al. Arthritis & Rheumatology. October 28, 2025.
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