There’s little more demoralizing to an undiagnosed patient than:“We don't know how to help you.” Why is the driving force behind searching for answers. It's how we can test PEG ADA2, develop the ADA2NOW meter & launch a patient registry. Support the work:dada2.org/donate

Estimate: 1/237 people globally may be a DADA2 carrier. Perhaps 35,000 people have full DADA2. (Source: prevalence study w/ @broadinstitute ) ➡️ We only know of appx. 800 patients. It will take peds, rheums, neuros, immunos & hems to help find them all! dada2.org

We estimate that roughly 40 labs in 40+ countries have studied DADA2. And there are more than 475+ papers written about the disease. That’s why we bring researchers together. Collaboration is the way to a cure. Learn more: scholar.google.com/scholar?h…

Patient stories are wh we exist. We want them to move from being a medical mystery suffering a long diagnostic journey to a diagnosed patient who knows how to manage their care. #raredisease #patientstory #dada2

Here's the first of 10 things DADA2 patients want others to know. Medication is tricky. We found TNF inhibitors - works best for preventing stroke. But treating the symptoms isn’t enough. That is why we are working to develop PEG ADA2. Learn more at dada2.org

And now we meet Stephen - whose love of the outdoors cannot be eclipsed by his DADA2 diagnosis. Cheers, Stephen! Whether we are a patient, a caregiver or a supporter, you're an inspiration! #raredisease #dada2too

10th Anniversary! Built on progress, what's coming-we hope-is a cure, a specific treatment that replaces what is lost so patients can live life fully. We're ready to expand expertise and support. Who needs to know about DADA2? Tag them ! We'll connect! dada2.org/10-years-marking-a…

Diagnosis, pathophysiology, management, & BMT - every part of the journey matters! Join ESID Grand Round/How I Treat DADA2, Tues., Sept 29th @ 16:30 CET. Moderated by @IsabelleMeyts & @marcogattorno feat. presentations from leading experts in the field. zoom.us/webinar/register/WN_…

Lex Cowsert Ph.D. CSO & Mary Makley, Executive Director, are in Boston w/@GlobalGenes Rare Drug Dev Symposium. If you're here, find us! If not, we'll share learnings soon. Looking forward to tomorrow's pitch session and being with our #RareasOne Cohort again! #rdds26 #raredisease

Our August newsletter is live with a nod to our 10th anniversary - a milestone we will mark for the rest of the year. dada2.org/10-years-of-the-da…

DADA2 ...or...DADA2TOO!! Every patient has a story, and as we kick off our 10th anniversary, we're telling them. More than a Dx, these patients live full lives while navigating disease. Today we feature Amber Whitmer...how does she spend her days? Take a look...

Are you a physician? Do you know about DADA2? You are a key part of #dada2awareness so more patients are identified & treated before the #inflammation takes its toll on a body. Share this post today & learn more - we have resources specifically for docs! dada2.org/doctors-researcher…

It's DADA2 Awareness Day. DADA2 mimics diseases. Recurrent fevers often dismissed as normal kid illness. Studies estimate 35,000 patients globally - only 800 known today. Rest are un/misdiagnosed. Let's post for every patient - 800 posts today & change the story. #dada2awareness

DADA2 Awareness Day is 7/31. GOAL: a post from each of us for every one of the 800+ patients we know of today. 800 posts about DADA2. 1 day. How we'll get there: 📷Pick an image & share it #️⃣Use the hashtag #dada2awareness 📷Share images so friends & fam can post Let's go!

Collaboration runs on a spectrum. For DADA2, one side of the spectrum is patient-driven, honoring loved ones through a first-ever DADA2 Awareness Day 7/31. The other side is research now entering mammalian animal model work. Latest newsletter shows both: dada2.org/dada2-awareness-da…

May's newsletter feat. collaboration necessary for #rarediseases: 👨‍👩‍👧‍👦 Prevalence studies reach milestone 🧬 Gene therapy updates for patients 🩺 Care connections in Egypt 🗞️ 6 new research studies globally What's most interesting? Read & Sign Up ⬇️ dada2.org/may-2026-collabora…

Collaboration & community are everything when you're solving a rare disease. If you are a researcher/clinician who has presented on DADA2 (talk or poster) in '26, drop the details below - title, meeting name, location, date, videos/photos. We'll feature in our next newsletter.

Our latest newsletter is OUT! From the long-game of research and practical findings for care to patients visiting the NIH to fundraising, our community remains active on a GLOBAL LEVEL. Read April's stories! dada2.org/april-2026-action-…

We are just about $500 away from reaching our Rare Disease Day fundraising goal. Will you help us top out the thermometer? secure.qgiv.com/event/dada2r…

Thrilled to join Nashville rare disease advocates at Rare Disease Day event to view a documentary through Too Rare to Care. Great time of connection & learning. Thanks to Potocsnak Center for Undiagnosed and Rare Diseases at VUMC for hosting us with @RareDiseases. #rarediseaseday