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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 the 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.

We are beginning preliminary conversations with physicians, researchers and patients. Please reach out if you are interested in joining or informing your patients!

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 time to meet some 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're 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 in the fall of 2023 was the Scientific Meeting of Physicians and Researchers to dig deep into the most foundational science of the ADA2 gene, which we believe will be the next best step to lead to a cure. As we plan future events, we'll share updates when we have more details!


Donate Blood

Donating blood can help so many patients, including DADA2 patients. Look for local opportunities 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 resource.


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.