November 2023: DADA2 Conference Recap
Dear DADA2 Community,
What happens when you get nearly 100 scientists and clinicians in a room for 36 hours to share their latest findings and questions on DADA2?
Well, you get 30+ talks updating on the science and clinical news. You get 10+ posters that generate hours of discussion among scientists and doctors alike. You get side conversations and pages of notes and agreements to follow up, join efforts, and continue to pursue treatments and a cure.
But you also get camaraderie. A shared sense of purpose. And really, a true family feel. After so many years of only communicating online, it was a pleasure to shake hands and share meals with each professional dedicated to DADA2.
This year, from the Foundation, we specifically focused on sharing updates with the DADA2 Patient Registry and our new website, both of which are featured below. There is MUCH more to come on the Patient Registry. While it is not yet ready for you to sign up, we do want you to be aware of it because it will take ALL of us to make it the valuable resource we know it can be.
A special thanks to every attendee who traveled ten minutes to thousands of miles for a brief but impactful gathering. I am especially indebted to the two founders of this disease, Dr. Dan Kastner of the NIH for hosting and Dr. Paulina Navon Elkan of Shaare Zedek Medical Center for attending all the way from Israel.
We look forward to what’s to come in 2024! Until then, thank you for all you do.
Chip Chambers, M.D.
Founder and President, DADA2 Foundation
The 4th International Conference: A Recap
Click image above for more photos.
Below is a very brief roundup of highlights from the conference. There is no way to share every single update; but what we can tell you is that these advancements show that more patients, more awareness and better testing is helping us identify the full scope of who is impacted by DADA2 and how. Videos of every talk will be available soon on our YouTube channel.
- Many physicians and researchers worked together this past year to develop and publish the DADA2 Consensus Statement. Representing these men and women, Dr. Pui Lee presented on the benefits of such guidance to physicians identifying and treating patients, and for patients as they manage their disease.
- We welcomed the identification of new patients from four additional country cohorts, bringing the total known DADA2 patients to somewhere around 650.
- The basic cellular function of ADA2 is currently being studied so that we can gain a better understanding of new therapies that may help.
- Diagnosis is also being studied so that new approaches can help identify patients faster.
ON THE VERGE OF DISCOVERY:
Updates from the DADA2 Foundation
Do you know that feeling? When you’re on the verge of discovery? You can practically feel it! That’s where we are with the DADA2 Foundation. Over the next year, we will continue on several key initiatives. It will take all of us to continue to progress toward launches for each, so here is an update of what we’ve accomplished this year, what’s on deck for the coming year, and how you can engage in it.
THE DADA2 Patient Registry
The Patient Registry is currently in beta testing! We are fully IRB approved and working with a small group of physicians, researchers, and patients to test the platform.
How can you get involved? Watch for announcements regarding the launch, which should happen in early 2024. If you are a clinician, consider being a Registry champion in your country. More to come!
Conference Connections
For the coming months after a momentous gathering like the Conference on DADA2, we anticipate more conversation and interaction among our global community. We will bring you those stories as they happen, and hope you will read them and see where your research, questions, ideas, and stories can interact.
How can you get involved? If we can ever help connect you to any researcher or physician who is part of our community, we will do our best!
Consensus Statement Promotion
The Consensus Statement publishing is truly a game-changer. In the coming year, we will work to intentionally raise awareness for the Consensus Statement among the kinds of physicians who may encounter a DADA2 patient at their first symptom.
How can you get involved? We will reach out to clinicians in various disciplines and countries to brainstorm on how we can share this paper widely in very practical ways.
Website & Language Translation
This past summer, we launched a new website with resources for patients, physicians, and researchers. Check out the fully interactive human graphic that allows you to explore all 130+ sign and symptoms of DADA2!
How can you get involved? We currently have an automatic translator on the website. Since the information we share is so complex, however, we are looking for help with translation. This is a high expense, so if you or someone you know can donate translation services, let us know.
Donate to the DADA2 Foundation
We are approaching the end of an incredibly successful year, and look forward to one that makes even more progress toward new ways to identify, treat and cure DADA2. Your gifts will be used to foster the collaboration it takes to cure a rare disease! Please keep us in mind with your year end giving.
