TAPS Support

May 17, 2022May 17, 2022

A TAPS Story From South Africa: Emily and Aimee

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We would like to thank the Cowan family for sharing Emily and Aimee’s TAPS story. To find out how you can help support the family, please click this link, or scroll to the bottom of the page.

2020 was a big year. Covid came and took over all our lives. And it is in these Covid times that Emily and Aimee’s TAPS story began.

After blood tests and double-checking, I had to tell my husband that I am pregnant again at 43. We already have two teenagers at this stage of 11 and 13. There was no laughter and cheering, just three weeks of tears. After I went to the doctor for the first time, another two weeks of tears because we found out it was twins – MODI twins.

February 28, 2022February 28, 2022

ORPHA… What?

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In January this year, Twin Anemia Polycythemia Sequence (TAPS) and 2 other diseases affecting monochorionic twins were granted an ORPHA Code and listed in the Orphanet database of rare diseases. But what does it mean that there’s an ORPHA code for TAPS?

It’s an exciting step because it means that now, TAPS is officially listed as a rare disease and will open a lot of doors in relation to research and international collaborations and make it easier to collect data for research.

But why is this important, and how will it help research? Let’s talk about it!

March 30, 2021March 30, 2021

Talking TAPS With Twiniversity

Did you catch Stephanie talking with Natalie Diaz about TAPS on Twiniversity earlier this month? They sat down to talk all things TAPS, and help bust some myths, as well as talk about the important stuff you need to know.

Watch the full interview here: Learn About TAPS With Twiniversity.

Want more information about TAPS, or want to connect with a community of families who have been there? Join our Facebook group, or get in touch.

Twiniversity is a fantastic online resource for parents of multiples, sharing stories, creating resources and giving great information about all things multiple. Follow them on Facebook here.

September 25, 2020September 26, 2020

TAPS And Frustration: It’s A Real Struggle

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TAPS causes so much frustration. This blog is about living with this fact.

I’ve talked about our story so many times, and I’m pretty sure most of you can recite it by heart. Born at 31 weeks with Twin Anemia Polycythemia Sequence (TAPS) in 2013, one of the best ways to raise awareness is to talk about our story on repeat. It’s guaranteed you’ll either get annoyed by me or want to join my campaign ;).

September 15, 2020September 21, 2020

Congratulations Dr. Tollenaar: A New Era Of TAPS Research

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I had the privilege of being invited to the promotion and Ph.D. Defense of up-and-coming TAPS researcher, Dr. Lisanne Tollenaar this month. Here’s how the day shaped up.

One of the more interesting parts about the TAPS Support Foundation is that we get to see the other side of not only research, but we get to talk to emerging researchers and also learn the latest news on what has been discovered about TAPS. Even though it was discovered 15 years ago, and we know more than ever about it, there is still so much that we don’t know, and we continue to learn more.