DADA2 Foundation

@IsabelleMeyts @immunophilia @marjon_wouters @ERC_Research @FWOVlaanderen Very important body of research from Dr. Meyts about the pathophysiology of the ADA2 enzyme in DADA2!

New from us: DADA2 cells exhibition increased cell death levels. Congratulations @immunophilia @marjon_wouters and the entire ADA2 team. Thank you for funding our work @ERC_Research and @FWOVlaanderen. rdcu.be/e9Aub

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/dada2rdd…

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

Local to Nashville? If you drive down West End Avenue - home to many health-focused companies & orgs - look up! In honor of #RareDiseaseWeek, billboards are lit up with stats that remind us: rare disease is all around us. How will you raise awarenss? Tell us! 👇

Life with DADA2 or any #raredisease isn't easy. More info & people who know what life is like helps. 🥳We loved seeing 20+ patients/caregivers from 8 countries last weekend for an online gathering. 🤝Give this #rarediseasemonth to support these gatherings! dada2.org/donate

“Even the doctors were confused. I wanted to live more.” What's a DADA2 journey? Tomas tells us in a self-made video about being a lonely child to being an active adult. He is 1 face of 650+ known DADA2 patients. We want to find each one. #rarediseaseday youtube.com/watch?v=LqKpcu…

Surprising numbers? Especially the difference between known DADA2 patients and possible total population? This #RareDiseaseDay, we honor the bravery of the world's rare disease warriors. Help us make sure patients and physicians get resources. dada2.org

Latest newsletter: #RareDiseaseDay and emerging research on why patients present with different symptoms. Join us this month and share about DADA2 - just one of the world's 6,000 rare diseases! dada2.org/january-2026-b…

Last 2025 update, this time with 4 min. 🎥 on the ADA2-NOW METER, which can speed diagnosis to just 15 minutes. Important steps need to be taken - find out what and how you can support as this year comes to a close. dada2.org/2025-update

⏳We are halfway to our fundraising goal! Let's keep it going! Monthly donors help us sustain our mission all year long. When you join AT ANY LEVEL, we'll send you a TOGETHER2CURE DADA2 Sticker. Stick it anywhere you want to show your support! dada2.org/donate

The Foundation started in a rather funny way, but is truly the result of passion & determination to take one act and have a lasting impact. 📽️ from Dr. Chip Chambers telling the story & the work 10 years later to convene researchers & support patients. dada2.org/2025-update

DADA2 info now avail in Swahili! Thanks to Dr. Aura Nzinga, ped rheum fellow at Montefiore Health Center NYC and Kenyan native. Translation is expensive so we appreciate her and your help to translate, print, & share info so we can find un-dx patients: dada2.org/donate

📩 Newsletter drop - will you share it? This 2025 recap points to our mission through each story: 🌍Global translations for EASIER DIAGNOSIS 🫂 Patient stories of COMMUNITY SUPPORT & RESOURCES 🧬Updates on SCIENTIFIC DISCOVERY from research network Join us conta.cc/48BTaZV

Is there a specific treatment for DADA2? CSO Lex Cowsert discusses advancements we're pursuing in PEG-ADA2. We are still years away, but steps are being taken to use a compound that can replace lost ADA2 in the body. Learn more & support the work. dada2.org/2025-update

What's the latest research in DADA2? The global community is publishing often & we talk about one specific study on symptomatic carriers in this short 📽️ w/CSO Lex Cowsert. Is there more to discover about DADA2 for those who only carry one mutation? dada2.org/2025-update

@Abhilasha21822 Dr Abhilasha Manwatkar thank you for being such a great advocate for DADA2. For anyone reading this you can contact the DADA2 Foundation dada2.org with any questions about DADA2. Dr. Chip Chambers.

When to suspect DADA2? ✔️ Child/teen with medium-vessel vasculopathy ✔️ Livedo / digital necrosis ✔️ Cytopenias (anemia, leukopenia, thrombocytopenia) ✔️ Recurrent fever, stroke, neuropathy ✔️ Low IgM/IgG or infections ✔️ PAN-like picture but autoimmune markers negative 💡 Early diagnosis = Anti-TNF can be life-saving. Don’t miss DADA2 in young patients with “unexplained gangrene.”

A 13-year-old with 3-month digital & toe gangrene, leukocytosis + anaemia and thrombocytopenia … ANA/ANCA/APLA / 2D echo all NEGATIVE? Think beyond Polyarteritis Nodosa (PAN). Think DADA2..

Meet Sylvia - who donates monthly to DADA2 to honor the fight of her three granddaughters who live with DADA2. Will you join Sylvia? There's still time today to be a monthly donor - and we'll send you a thank you gift! dada2.org/donate

It's #GivingTuesday: become a monthly donor to us! Our everyday work relies on sustained support - talking to patients & physicians, collaborating w/ researchers, & pursuing partnerships. Are you one of 50 new monthly donors we need? dada2.org/donate

@JRheumatology There have been recent papers suggesting that all PAN patients (especially pediatric cases) should be screened for DADA2. Screen by either and ADA2 enzyme level or targeted gene sequencing.

🧒Classic PAN vs. monogenic DADA2 in kids: 🕒 DADA2 hits earlier (med 4 y) 🧬 Linked to consanguinity 📉 Growth issues & livedo racemosa → DADA2 🫀 HTN, renal, fatigue → classic PAN 💉 Anti-TNF =key for DADA2 🧪 Biologics for tough PAN cases journals.lww.com/jclinrheum/abs…

Thrilled that Dr. Aman Sharma (@Amansharmapgi) is now president of the Indian Rheumatology Association. His dedication to #dada2 & #raredisease in rheumatology is making a significant global difference. Read more: theindiapost.com/dr-aman-sharma…