Tatton Brown Rahman Syndrome (TBRS) Community

The Tatton Brown Rahman Syndrome Community supports research and educates individuals with TBRS and their families, friends, and service providers.

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

By Sunday → join in ~5 minutes + be entered into the $5K caregiver giveaway.→ https://t.co/b3OJXbrLt8

@CitizenHealth #ShareForRare #TheGreatUnlock #RareDisease #RareCommunity #AccelerateCures #Neurodev #Neuromuscular #TBRS #TBRSCommunity

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

Nov 19, 7pm ET — Learn how families use AI Advocate for reports, IEP prep & provider notes. Privacy tips included. Info only. Sign up: https://t.co/vrrGSJIohM]

#RareDisease #RareParents #Caregiver #Genetics101 #IEP #SchoolSupport #HealthLiteracy #AIforGood #TBRS

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

25 new families by Thanksgiving.
5 minutes to join.
A chance at $5K in caregiver prizes.
A real impact on rare care.
→ https://t.co/b3OJXbrLt8

@CitizenHealth #ShareForRare #RareDisease #AccelerateCures #TBRS #TBRSCommunity

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

Because rare care shouldn’t feel like a full-time puzzle. 🧩 Sign up before Nov 30 → enter the $5K Caregiver Recharge Giveaway: https://t.co/b3OJXbrLt8

@CitizenHealth #ShareForRare #RareDisease #AccelerateCures #TBRS

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

🧬 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 [email protected]

#RareDisease #TBRS #DNMT3A #RareResearch

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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 https://t.co/l9nJQSdg75. #RareDiseases #TBRS #TBRSCommunity

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

We already speak rare 💜 From Day One, AI Advocate helps families find answers and make care easier while records come together securely → https://t.co/b3OJXbrLt8 ($5K Caregiver Recharge Giveaway)

@CitizenHealth #ShareForRare #RareDisease #AccelerateCures #TBRS

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

Tired of repeating your story? AI Advocate puts your records + answers at your fingertips. Try it before Nov 30 → $5K Giveaway: https://t.co/b3OJXbrLt8

#ShareForRare #RareDisease #5Minutes #AccelerateCures #PatientEngagement #Neurodev #Neuromuscular #TBRSCommunity #TBRS

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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!

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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: https://t.co/R5gaY9UzhT

This event is open to families, researchers, and clinicians.

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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: https://t.co/R5gaY9UzhT

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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
https://t.co/R5gaY9UzhT

This talk is open to families, researchers, and clinicians!

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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 https://t.co/Zatq8GvKPb to download the free Parent Toolkit.
#Genetictestingactionday #TBRSCommunity

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

We’ve partnered with @CureSHANK to promote early genetic testing as a first step through Genetic Testing Action Day on July 25. Visit https://t.co/Zatq8GvKPb to access family friendly tools and be part of the #StartGenetic movement.

#genetictestingactionday #TBRSCommunity

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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 https://t.co/Zatq8GvKPb.

#genetictestingactionday #TBRScommunity

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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! [email protected]

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

TBRS Mom, Zoe Wisnoski's story "The System is Broken" made @Story Collider's "Stories That Changed Our Perspective in 2024" list. Congrats, Zoe!

https://t.co/0OA01wWxOq

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

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!

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

TBRS Community PRESENTS (part 3 of 3): Our Community has really grown this year! Click through to see more about our development in 2024!

[Tatton Brown Rahman Syndrome (TBRS) Community @TBRSCommunity]

🎉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