Each year we hold a meeting with our whole team, to discuss the past year, and work on our plans for the next year.
This year was no exception, with nearly our whole 15 person team showing up for our Zoom meeting and lots of exciting conversations about the future. Covering the Twin Run, Rare Disease Day, International TAPS Day, and also some new research projects, we had a great and inspiring session.
We are so excited to announce the theme of International TAPS Day 2022. Inspired by the connections that cause TAPS, we wanted to share how these tiny connections have made a huge impact on the world of twins, with a new diagnosis and research.
We also want to highlight strengthening connections between patients and researchers, and creating meaningful and empowering conversations about the challenges we all face when it comes to Twin Anemia Polycythemia Sequence, either as a physician, a researcher, or a patient.
International TAPS Day 2022
This is going to be an epic year for International TAPS Day, with exciting activities and sessions planned, both online and in person. We can’t wait to connect with you, and continue creating a fantastic worldwide TAPS community.
Save the date and join us on March 3rd as we recognize 16 years of research into our disease, and connecting patients, researchers and doctors together to help raise awareness of our rare disease.
We can’t wait to connect with you!
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International TAPS Day
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What if we could combine researchers, patients, academics, and care providers in one place, and create a patient network, as well as support research? Meet the TAPS Support Foundation, where we’ve done exactly that.
In December 2013, on a cold morning in Leiden, 2 little girls were born. Identical twins born at 31 weeks, with one so pale and anemic that she looked like a ghost, and her sister, red, puffy, and overloaded with red blood cells. They had overcome incredible odds to make it this far, battling a chronic disease that had only been described for the first time 8 years earlier. Their story is the inspiration behind, and the beginning of the TAPS Support Foundation.