May's newsletter feat. collaboration necessary for #rarediseases:
๐จโ๐ฉโ๐งโ๐ฆ Prevalence studies reach milestone
๐งฌ Gene therapy updates for patients
๐ฉบ Care connections in Egypt
๐๏ธ 6 new research studies globally
What's most interesting?
Read & Sign Up โฌ๏ธ
https://t.co/tFuB103p0x
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! https://t.co/U5QcE8906W
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! ๐
Life with DADA2 or any #raredisease isn't easy. More info & people who know what life is like helps. ๐ฅณWe loved seeing 20+ patients/caregivers from 8 countries last weekend for an online gathering. ๐คGive this #rarediseasemonth to support these gatherings! https://t.co/otUkl1I7aM
โEven the doctors were confused. I wanted to live more.โ 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 https://t.co/JqLbbPWCAE
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.
https://t.co/3jvgb5kaap
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! https://t.co/YS1z8npmFe
Last 2025 update, this time with 4 min. ๐ฅ 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.
https://t.co/yOPewrxDxJ
โณWe 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! https://t.co/otUkl1I7aM
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. ๐ฝ๏ธ from Dr. Chip Chambers telling the story & the work 10 years later to convene researchers & support patients. https://t.co/yOPewrx5Ib
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: https://t.co/otUkl1IF0k
๐ฉ Newsletter drop - will you share it? This 2025 recap points to our mission through each story:
๐Global translations for EASIER DIAGNOSIS
๐ซ Patient stories of COMMUNITY SUPPORT & RESOURCES
๐งฌUpdates on SCIENTIFIC DISCOVERY from research network
Join us https://t.co/jVrV4zOKD8
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. https://t.co/yOPewrx5Ib
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 ๐ฝ๏ธ w/CSO Lex Cowsert. Is there more to discover about DADA2 for those who only carry one mutation? https://t.co/tEEWeI5SUb
@Abhilasha21822 Dr Abhilasha Manwatkar thank you for being such a great advocate for DADA2. For anyone reading this you can contact the DADA2 Foundation https://t.co/3jvgb5kaap with any questions about DADA2. Dr. Chip Chambers.
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! https://t.co/otUkl1IF0k