The Tatton Brown Rahman Syndrome Community supports research and educates individuals with TBRS and their families, friends, and service providers.
Joined November 2019
- Tweets 236
- Following 173
- Followers 178
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61 Photos and videos
By Sunday → join in ~5 minutes be entered into the $5K caregiver giveaway.→ citizen.health/ai-advocate/t…
@CitizenHealth #ShareForRare #TheGreatUnlock #RareDisease #RareCommunity #AccelerateCures #Neurodev #Neuromuscular #TBRS #TBRSCommunity
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Nov 19, 7pm ET — Learn how families use AI Advocate for reports, IEP prep & provider notes. Privacy tips included. Info only. Sign up: ciitizen.zoom.us/webinar/reg…]
#RareDisease #RareParents #Caregiver #Genetics101 #IEP #SchoolSupport #HealthLiteracy #AIforGood #TBRS
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25 new families by Thanksgiving.
5 minutes to join.
A chance at $5K in caregiver prizes.
A real impact on rare care.
→ citizen.health/ai-advocate/t…
@CitizenHealth #ShareForRare #RareDisease #AccelerateCures #TBRS #TBRSCommunity
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Because rare care shouldn’t feel like a full-time puzzle. 🧩 Sign up before Nov 30 → enter the $5K Caregiver Recharge Giveaway: citizen.health/ai-advocate/t…
@CitizenHealth #ShareForRare #RareDisease #AccelerateCures #TBRS
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🧬 TBRS Researchers!
Join us for the TBRS Community Virtual Science Day on February 11, 2026.
We’re seeking presenters to share their work related to TBRS or DNMT3A with our research network.
Submit your interest to kit@tbrsyndrome.org
#RareDisease #TBRS #DNMT3A #RareResearch
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It’s here! We’re excited to announce that @RareDiseases has launched the new
IAMRARE mobile app.
Download the IAMRARE mobile app today from the Apple App Store or Google Play
and learn more about the registry at tbrsregistry.iamrare.org/. #RareDiseases #TBRS #TBRSCommunity
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We already speak rare 💜 From Day One, AI Advocate helps families find answers and make care easier while records come together securely → citizen.health/ai-advocate/t… ($5K Caregiver Recharge Giveaway)
@CitizenHealth #ShareForRare #RareDisease #AccelerateCures #TBRS
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Tired of repeating your story? AI Advocate puts your records answers at your fingertips. Try it before Nov 30 → $5K Giveaway: citizen.health/ai-advocate/t…
#ShareForRare #RareDisease #5Minutes #AccelerateCures #PatientEngagement #Neurodev #Neuromuscular #TBRSCommunity #TBRS
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Announcing the 2026 TBRS Community Super Summit!
Get ready to unite, recharge, and celebrate our amazing TBRS heroes! 💥
Just like in 2023, we’re bringing families, researchers, and clinicians together for one powerful joint event!
👉 Scan the QR code for more information!
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Tonight! Don’t miss our OSA Speaker Series presentation:
Aortopathies and Genetic Overgrowth Syndromes, with Dr. Shaine Morris
Monday, October 6, 2025 at 5:00pm ET
Register here: givebutter.com/aorta
This event is open to families, researchers, and clinicians.
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Just a few days left until our next OSA Speaker Series presentation!
Join us on Monday, October 6 at 5pm ET for Aortopathies and Genetic Overgrowth Syndromes with Dr. Shaine Morris
✅ Open to families, researchers, and clinicians
✅ Free registration: givebutter.com/aorta
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Join us for the next installment of the Overgrowth Syndromes Alliance Speaker Series!
Aortopathies and Genetic Overgrowth Syndromes
with Dr. Shaine Morris
Monday, October 6, 2025 at 5:00pm ET
givebutter.com/aorta
This talk is open to families, researchers, and clinicians!
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Today is the first-ever Genetic Testing Action Day! We’re proud to raise awareness about why early genetic testing matters. Spread the message on social media and visit StartGenetic.org to download the free Parent Toolkit.
#Genetictestingactionday #TBRSCommunity
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We’ve partnered with @CureSHANK to promote early genetic testing as a first step through Genetic Testing Action Day on July 25. Visit StartGenetic.org to access family friendly tools and be part of the #StartGenetic movement.
#genetictestingactionday #TBRSCommunity
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We’re proud to support the #StartGenetic campaign to raise awareness about early genetic testing. Mark your calendar for Genetic Testing Action Day on July 25 and download the free Parent Toolkit at StartGenetic.org.
#genetictestingactionday #TBRScommunity
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Calling All TBRS Champions! Each year, TBRS families raise over $100,000 through fundraisers—cornhole tournaments, wine tastings, and more. Join us! Contact Jill to host your event. Let's make an even greater impact! jill@tbrsyndrome.org
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TBRS Mom, Zoe Wisnoski's story "The System is Broken" made @Story Collider's "Stories That Changed Our Perspective in 2024" list. Congrats, Zoe!
megaphone.link/ADL4681946097
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As we say goodbye to 2024, we look forward to the promise of 2025. From all of us at the TBRS Community, thank you for being part of our journey. Wishing you a joyful and hope-filled New Year!
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TBRS Community PRESENTS (part 3 of 3): Our Community has really grown this year! Click through to see more about our development in 2024!
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🎉TBRS Community PRESENTS (part 2 of 3): Curious what support we've offered this year? Click through to see a recap for 2024! 🎉 #TBRSCommunity #Communitysupport #TattonBrownRahmanSyndrome
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