Thanks to the hard work of physicians, researchers, patients and their families, the DADA2 official consensus statement has been published. These statements outline how to diagnose and treat DADA2, based on the input of those who have navigated the disease over the last eight years. If you are a physician or patient & family who is facing a new diagnosis, this is a good first step.
The DADA2 Patient Registry
The world’s only Patient Registry dedicated to DADA2, and we are looking for the involvement of every DADA2 patient in the world. The more information we can gather, the better we can create a comprehensive picture of the disease that includes clinical data as well as patient-reported outcomes. Learn how you can encourage your patients to join this secure, de-identified database developed on a platform used by world class health institutions.
When the Registry is ready to launch, we will share more details so that physicians around the globe can begin to introduce the project to their patients.
The 2023 Scientific Meeting
A focused group of DADA2 physicians and researchers from around the world will meet in 2023 to take a deep dive into the most foundational scientific elements of the ADA2 protein and its function. As a global community, we believe this is the next best step we can take to find treatments for DADA2.