In 2021, we celebrated the first official International TAPS Day. In 2022, we’re celebrating again, this time with a new theme – Connections.
We recognize March 3rd as International TAPS Day because this was the day that our disease got a name, back in 2006. Within days of each other, 2 papers were published – on March 1, Robyrr et al published this paper describing a unique complication of TTTS laser surgery, where tiny connections were missed or not sealed completely.
Then on March 3rd, a second paper, describing spontaneous TAPS was published by Lopriore et al. This paper described tiny connections in the placenta that caused polycythemia and anemia in twins sharing a placenta. From this paper, Twin Anemia Polycythemia Sequence got its name, and from the tiny connections in the placenta, we were inspired by our theme.
The Twin Anemia Polycythemia Sequence community exists because of tiny connections in the placentas of monochorionic twins. These connections cause many issues, but they have also created a strong, and connected community.
Because of these small connections, TAPS families have actively sought each other out, and supported each other through a challenging, and misunderstood diagnosis. They have helped each other battle myths, and empowered each other to advocate for ongoing care and further diagnosis.
We are connected through research into TAPS, and how this impacts our lives. A TAPS diagnosis is difficult, as while we know a lot about this rare disease, we are still learning more. It’s important that we connect patients to research and to doctors who embrace the latest knowledge and information about TAPS.
Worldwide, we are connected by a rare disease. It doesn’t matter who you are, where you live, or your education level – all twins who share a placenta are at risk of TAPS. We need to raise awareness of our rare disease, and through this passion to educate and empower rare disease patients, we are connected.
Important clinical trials like the TAPS Registry and the current TAPS Trial have helped researchers connect the dots, and understand more about how it happens, and the short and long-term effects of our disease. These connections are vital to continuing research and raising awareness in the medical community.
Through connecting and creating communities made up of researchers, doctors, patients, and families, we can support each other, educate each other on the topics that matter, and collaborate on new research projects.
When we connect the pieces, we have an open, communicative, and empowered community that raises awareness of TAPS, and supports ongoing research. Connections are an important part of Twin Anemia Polycythemia Sequence, and that’s why we need to recognize this.
March 3rd Is International TAPS Day.
In 2021, we celebrated the first official International Twin Anemia Polycythemia Sequence (TAPS) Day, and it was recognized across the globe. The theme was “15 Years of TAPS Research.“
“TAPS research has evolved so much in the past 15 years. We now know how and when to screen with MCA dopplers. We also know more about the other signs and that it is vital to look for those. It’s also essential that we recognize the short and long-term effects of post-laser TAPS and spontaneous TAPS. Research is evolving continuously, and we need to raise the awareness of staying up to date with the latest findings. Twin Anemia Polycythemia Sequence Day is about recognizing the evolution of TAPS research and raising awareness. ”
Dr. Enrico Lopriore
Patron of the TAPS Support Foundation
Celebrate International TAPS Day in 2022
We’ll be updating this page regularly with news and updates about the theme, and don’t forget to follow us on social media! Join the Facebook Event here, or follow us on social media for more news and updates. Just look for @tapssupport!