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A TAPS Story From South Africa: Emily and Aimee

TAPS-Story-from-South-Africa_-Emily-and-Aimee-twin-anemia-polycythemia-sequence-twins-support

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.

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ORPHA… What?

twin anemia polycythemia sequence taps orpha code twins foundation stichting awareness rare disease

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!

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A letter to Autumn.

Autumn's Legacy

A year has passed since we said goodbye, and so much has happened.  I wanted to write to you today to tell you more about your story, and why we are passionate about Autumn’s Legacy

You are loved and will always be loved.

We miss you every day, and your sisters are sweet and spirited little girls. When I look at Leighton, I know I also see you with her.

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15 Research Milestones For Twin Anemia Polycythemia Sequence (TAPS)

taps research milestones twin anemia polycythemia sequence

Welcome to International TAPS Day! Today we’re highlighting the incredible, ground breaking research that has been done over the past 15 years into Twin Anemia Polycythemia Sequence, and discovering more about what the future holds for TAPS research. We’ll be breaking down myths, sharing facts, marking milestones and celebrating the research that has been done into TAPS. Let’s celebrate TAPS research!

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Congratulations Dr. Tollenaar: A New Era Of TAPS Research

congratulations tollenaar taps twin anemia polycythemia sequence ttts twins support foundation

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.

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