The festive season is about to go into full swing, with celebrations for Channukah, Sinterklaas, Christmas and the New Year kicking off. Today is Giving Tuesday, a day where we are encouraged to give back to the wider community and support charities with gifts and volunteering.
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We’re still coming down from the excitement of the Twin Run! Who would have thought that our first major fundraising event would have been so incredibly successful, raising over €10,000 for twin research?
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In 2021, our big, hairy, audacious goal (BHAG) was to raise €10,000 to fund a part-time TAPS researcher within the LUMC in Leiden to continue research into Twin Anemia Polycythemia Sequence. Twins, and particularly research into TAPS have limited funding. Our goal is to raise funds for TAPS research, and also related conditions affecting monochorionic twins.
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We are so excited to announce a new project of ours – the Twin Talks Webinars. Built around frequently asked questions in the twin communities, this innovative collaboration between the TAPS Support Foundation and the LUMC, Leiden means that parents have access to leading researchers, and on the flip side, doctors can see the questions their patients have about Twin Anemia Polycythemia Sequence (TAPS), and the discussions they want to have with their doctors.
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This year on March 3, we’re recognizing the 15th anniversary of a crucial moment. You see, back in 2006, the first paper that named Twin Anemia Polycythemia Sequence was published online.
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When the Fetal Health Foundation in the US asked us to join them on a webinar about TAPS, and TAPS research, we jumped at the chance to talk about our passion. Why? Because we’re proud of is our partnership, so any opportunity to share our messages, and help promote our friends is always fantastic
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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.
Continue reading “Meet The Faces Behind The TAPS Support Foundation.”
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.
Continue reading “The TAPS Support Foundation: Connecting Families and Supporting Research Into Twin Anemia Polycythemia Sequence”