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Are you ready for International TAPS Day in 2023? Here’s the information you need!
During the week of February 27th – March 5th, we’ll be sharing a new campaign – #32Weeks.
TAPS twins are born at an average gestation of 32 weeks (source: Treatment and outcome of 370 cases with spontaneous or post-laser twin anemia–polycythemia sequence managed in 17 fetal therapy centers – Tollenaar et al., 2020), and face the associated challenges of prematurity, along with additional challenges related to our rare disease.
We also want to emphasise the impact of this diagnosis on families, and how getting the correct diagnosis can help them. We are also fundraising for the Well Bee Study, a study that aims to investigate the impact of a complicated monochorionic multiple pregnancy on the quality of life of their families.
About the 2023 International TAPS Day Theme
Our aim is to raise awareness of TAPS twins’ complications, along with awareness of the correct diagnostic criteria, treatment types, what testing needs to be done at birth, and what long-term testing these twins require.
In parallel to our primary campaign, February 28th marks Rare Disease Day. The theme for this year’s campaign is #ShowYourColors – so on this day, we’ll be utilizing the hashtag – #redandwhite and emphasising the importance of correct diagnosis at birth, and why it’s important to diagnose twins born red and white accurately.
What You Can Do
This year, we’d love if you share your TAPS story online. Share a picture of your red and white twins, tell their story, and use the hashtags #tapstwins #tapsday #redandwhite #32weeks #ITD2023 (and tag us in so we can reshare it! Look for @tapssupport on all social channels)
Alternatively you can use one of our pre-made social posts below (and we left room for your logo!)
Today is March 3rd, and we’re/I’m raising awareness of Twin Anemia Polycythemia Sequence (TAPS). #TAPSTwins need the right testing before & after birth, & long-term follow-ups to ensure a healthy future. www.tapsday.com #32weeks #redandwhite #tapsday #itd2023 @tapssupport
The average gestation for TAPS twins is #32Weeks. Today is March 3rd, and we’re/I’m raising awareness for #ITD2023 It’s time to accurately diagnose and follow up #TAPSTwins from birth to beyond. www.tapsday.com #redandwhite #tapsday #redandwhite @tapssupport
We’re also looking for people who would like to record a short video, and share their story with the world – if you’re interested – please get in touch (email us at email@example.com ). The more stories we can share on International TAPS day, the better. After all, everyone has a different story, and we think every story needs to be told. The more people sharing, the better!
Stay tuned on this page, as we’re going to update regularly, and give you more tools to use on the day.
International TAPS Day is about recognizing research, and raising awareness of our rare disease. Together, we can make an impact and share more about our rare disease. If you need help, or want to share your amazing ideas for the day with us, send us an email or send a message on social media. We’d be glad to collaborate and promote with you.
In 2023, TAPS Support combined with the LUMC Fetal therapy team and is holding the Twin Run. Inspired by the epic run in 2021 by Mart Smit, where he ran to connect the 3 hospitals that saved the lives of his twin sons, and raise much needed funds for twin research. This year, we’re raising funds for the Well Bee Study, and also hosting the Twin Day.
For more information about International TAPS Day, including press enquiries, collaboration, information about twin anemia polycythemia sequence and related diseases, please don’t hesitate to get in touch with us so we can help you with information. TAPS Support is a non-profit dedicated to raising awareness and helping find the right research to help support families and medical professionals through a TAPS diagnosis, and raising funds to continue this research.