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Today is World Prematurity Day! Did you know that around 60% of twins are born before 37 weeks? For TAPS twins, the average gestation is just 32 weeks, meaning that our families are very familiar with the neonatal units and long term outcomes of TAPS.

##WorldPrematurityDay2024 ##WPD2024 ##TAPStwins
November 16, 2024 at 11:00 PM
tapssupport.bsky.social
Collaboration is central at TAPS Support. We’re proud of our connection with the LUMC fetal therapy team. Stephanie met Prof. Enrico Lopriore, a leader in TAPS who values families’ input. This is how research stays real.
#TAPSTwins #PatientsAsExperts
June 12, 2025 at 9:14 AM
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Thank you to Prof. Asma Khalil, Prof. Enrico Lopriore, and Assoc. Prof. Jena Miller for an insightful TAPS Day webinar. Speaking on the role of patients in research was a privilege. We need more collaboration to drive progress.
tinyurl.com/tapsdaywebinar
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
TAPS day webinar
sbee.link
March 2, 2025 at 1:30 PM
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Time is running out to register for this free webinar kicking off the awareness week for International TAPS Day. Join leading experts as we explore the latest in TAPS research, care, and advocacy. Spots are limited. Register now: sbee.link/ptr634hjyv
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
March 1, 2025 at 10:22 AM
tapssupport.bsky.social
New paper on spontaneous TAPS measured ferritin within 48 hours after birth. In 10 twin pairs, donors had lower iron and recipients higher iron. The authors recommend checking iron at birth in all TAPS twins. Full paper: sbee.link/pauchwt7n4

#TAPSTwins #TAPSSupport
September 12, 2025 at 10:03 AM
tapssupport.bsky.social
Abby’s story: We couldn’t confirm, but our MFM later said the girls likely had TAPS. Diagnosed with sIUGR, inpatient at 26 weeks, delivered at 28+4. 92 days in NICU. Grateful for the community for helping me become an advocate. #TAPSTwins #InternationalTAPSDay #TAPSDAY #ITD2025 #NotJustTTTS
March 6, 2025 at 12:00 PM
tapssupport.bsky.social
Thank you to Prof. Asma Khalil, Prof. Enrico Lopriore, and Assoc. Prof. Jena Miller for an insightful TAPS Day webinar. The recording will be available soon via GEFOG.
For Stephanie Ernst’s talk and resources: sbee.link/cg4jbwudna
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
March 2, 2025 at 1:42 PM
tapssupport.bsky.social
TAPS Pocket Guide: quick reference for diagnosing and managing TAPS, developed with the Fetal Therapy team at LUMC Leiden. Hospitals and research teams can request copies: hello@tapssupport.com #TAPSTwins www.tapssupport.com/taps-po...
May 18, 2026 at 7:00 AM
tapssupport.bsky.social
We’re extending the LOSS-TAPS survey. Hearing loss is documented in some TAPS donors, including auditory neuropathy and sensorineural hearing loss. Please take the survey, or share it with your networks: www.tapssupport.com/parent-...

#TAPSTwins #HearingLoss
February 10, 2026 at 8:51 AM
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Today we launch a parent-led survey on hearing loss in monochorionic twins with Twin Anemia Polycythemia Sequence (TAPS). Open 12 Dec 2025 to 12 Feb 2026. Details for parents and professionals: www.tapssupport.com/parent-...
#TAPSTwins
December 12, 2025 at 2:58 PM
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New paper on TAPS after the loss of one twin reviewed 39 cases. Most surviving twins were born in the third trimester, early brain scans were clear, and deaths were rare. Read the study: obgyn.onlinelibrary.wiley.c...
#TAPSTwins #TAPSSupport
September 18, 2025 at 9:00 AM
tapssupport.bsky.social
At Twins Congress 2025, Stephanie Ernst, Dr. Lauren Nicholas and Dr. Rebecca Fischbein call for updated antenatal TAPS criteria. Delta MCA-PSV over 0.5 with additional markers improves diagnosis, reduces missed cases and supports better care and research worldwide.
#TAPSTwins
August 6, 2025 at 7:26 PM
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We love a good podcast, especially when it's someone sharing their TAPS journey.

Thanks to Marni for sharing her story with Mamamia!

Click here to listen: sbee.link/aybuefgcqn

#TAPSSupport #TwinParent #TAPSTwins
Dealing With TAPS: One Of The Rarest Twin Complications Ever
Mamamia Podcasts - Diary Of A Birth - Dealing With TAPS: One Of The Rarest Twin Complications Ever
sbee.link
July 16, 2025 at 5:37 AM
tapssupport.bsky.social
Doppler ultrasound changed care for twins. MCA Doppler helps spot TAPS early in many specialist centres. Emilie and Mathilde saw a museum display in Salzburg on its history. And yes, they’re unintentionally colour coded. If you know, you know.
#TAPSTwins #MCADoppler
June 22, 2025 at 8:00 AM
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Reunions with our care teams are always amazing, and we wanted to share this one with you, especially as Poppy and Billie turn 2 today! Marni writes: We are grateful for Dr Glenn Gardener. He's not only an extremely skilled doctor, but also a genuinely warm and kind person.
❤️🤍

#TAPSTwins
June 14, 2025 at 5:00 AM
tapssupport.bsky.social
Some TAPS families are left with questions, missed signs, and outcomes that could have been avoided. There’s still no clear approach to screening, monitoring, or treatment. While some teams lead the way, we need global collaboration. Families deserve better.

#TAPSSupport #TwinLoss #TAPSTwins
April 13, 2025 at 2:28 PM
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1 in 8 spontaneous TAPS donors may develop Auditory Neuropathy Spectrum Disorder (ANSD). Early detection through NICU screenings is key. Long-term follow-up is critical for monitoring speech, cognitive, and motor challenges. More: sbee.link/d4gu9fkmxq
#TAPSTwins #NotJustTTTS
March 7, 2025 at 8:00 PM
tapssupport.bsky.social
TAPS twins can climb mountains! Filip and Dumitru (R) were born at 29 weeks, diagnosed with spontaneous TAPS at 26 weeks, and treated with laser surgery. He has cerebral palsy and developmental delays due to a stroke in utero but continues to make progress. #TAPSTwins #TAPSDAY #ITD2025 #NotJustTTTS
March 7, 2025 at 12:00 PM
tapssupport.bsky.social
Post-laser TAPS and spontaneous TAPS differ in long-term effects. Donor twins in spontaneous TAPS face higher risks of NDI and cognitive delays. Long-term follow-up is key for proper development. Learn more at www.tapssupport.com/the-lon... #TAPSTwins #TAPSDAY #ITD2025 #NotJustTTTS
March 7, 2025 at 8:00 AM
tapssupport.bsky.social
The best treatment for TAPS is still under investigation. The Leiden University Medical Center (The Netherlands) has launched the TAPS Trial, comparing laser treatment with standard care.
Learn more: en.thetapstrial.com/informa...
#NotJustTTTS #TAPS #TAPSTwins
March 5, 2025 at 8:00 PM
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Meet Dr. Femke Slaghekke, a maternal fetal medicine specialist at Leiden University Medical Center. In this video, Dr. Slaghekke explains the treatment options for TAPS twins. Watch here: sbee.link/nf7683ewqv
#NotJustTTTS #TAPS #TAPSTwins
March 5, 2025 at 4:00 PM
tapssupport.bsky.social
Marni from the Gold Coast had in utero transfusions (IUT) after her twins were diagnosed with TAPS. Thanks to early detection and an incredible medical team, Poppy and Billie are now healthy little girls.
Watch her story: youtu.be/9-1zcvMRGv8?si=Yct...
#NotJustTTTS #TAPSTwins #TAPSDAY
March 5, 2025 at 12:00 PM
tapssupport.bsky.social
How do you treat TAPS? Options include expectant management, the Solomon laser technique, IUT, early delivery, selective reduction, and post-birth treatment. Treatment should be tailored to each case. More: sbee.link/37h9yqrueb
#NotJustTTTS #TAPS #TAPSTwins
March 5, 2025 at 8:00 AM
tapssupport.bsky.social
My twins were born at 34 weeks, but we didn’t know TAPS was the cause. Our recipient recovered quickly, but our donor needed transfusions, respiratory support, and was diagnosed with hearing loss. Read more: bit.ly/3F087tC
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
March 2, 2025 at 4:00 PM
tapssupport.bsky.social
Kicking off our awareness week with the team at Buzzi Children’s Hospital in Milan. Stefano Faiola, Daniela Casati, Arianna Laoreti, and Mariano Lanna explain why TAPS is not just TTTS.
Watch: youtu.be/0x39B1sgufM
#TAPSDay #ITD2025 #InternationalTAPSDay #TAPSTwins #NotJustTTTS
March 2, 2025 at 8:00 AM