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.
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.
More Ways To Help
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!
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.