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.
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.
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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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?
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.
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.
When we recently interviewed Amanda Gautier of Gautier Scientific Illustration, we had no idea the impact that this article would have. 20,000 views later, and over 100 shares on Facebook across different pages, this article impacted many families. We’re proud to announce that this has spawned a brand new partnership!
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