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Your Experience Matters

Without the patient's experience in addition to clinical data, we cannot create a full picture of DADA2.

Coming Soon: The DADA2 Patient Registry

No picture of a disease is complete without the voice of the patient. While the DADA2 community is fortunate to include engaged physicians and researchers, we cannot fully understand this disease without documenting the patient’s full experience alongside their lab work, imaging and other medical testing.

The DADA2 Patient Registry is the only one-stop-shop for bringing together all of that data on DADA2 patients into one repository. Every patient has the  opportunity to contribute their clinical and quality of life data into this single, secure database, which can then be reviewed by physicians and researchers who are pursuing the best treatments to all of DADA2’s symptoms as well as an eventual cure.

The Registry will be launching in late 2023. Check back for more details!

Our Stories: Living Life with DADA2

Life with DADA2 is complex, but hundreds of families around the world are managing and navigating it with their support systems of doctors, friends, fellow patients, and families.  Take some time to meet DADA2 patients living life to the fullest.

Tell Your Story

Every DADA2 patient has a story to tell. And your story helps not only fellow patients but also supporters of our work who seek to understand life with DADA2 as much as they can. We also know it can be hard to know where to start; so we are here to help you create your story in a way that honors your journey, whether you share it publicly or not!

Fundraise With Us

Like you, we believe that no patient should ever feel alone in their journey with a rare disease. We want them to know that, through the DADA2 Foundation, many are in their corner, fighting for their quality of life.

By investing in the work of the DADA2 Foundation, you come alongside each patient by funding the resources and research they need to live a healthy life. You can give in so many ways – a direct contribution, starting a fundraiser or asking your company to contribute. Every dollar raised is one more step together with each patient.

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Giving as a Community

From Facebook Fundraisers to live events, the DADA2 Community is actively investing in a cure!

More Ways To Help


DADA2 Events

Our focus this fall is the Scientific Meeting of Physicians and Researchers to dig deep into the most foundational science of the ADA2 gene, which will be the best next step to lead to a cure. We'll share more event updates when we have details!


Donate Blood

Donating blood can help so many patients, including DADA2 patients.  Look for your local opportunities to to donate blood in your community and help save a life. If you live outside of the U.S., please visit your local blood donation resources.


Bone Marrow Registry

While bone marrow transplants are rare for a DADA2 patient, they save a life when they are needed and often leave patients symptom free and “cured” as best we know. Learn how you can register to be a match.

Newsletter Sign Up

Join our monthly newsletter which highlights work being done around the globe to cure DADA2 and guide patients living with the disease. Visit the newsletter archive to learn more.