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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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Kitty & Willow: How A Diagnosis Changes Everything.

kitty and willow

After coming out of NICU with my twin girls in one piece but my mental health in tatters, I looked forward to a life for my twins with tentative positivity. I hoped that the white knuckle ride of multiple pregnancy was behind me. I avoided all the twin and multiples groups I had joined because, in all honesty, I was afraid of what I would read and the trauma it would bring up in me.

This is my story of how advocating for a different diagnosis helped me to heal.

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Introducing The New TAPS Staging System

new taps staging system

It’s time to talk TAPS staging systems! As you know, research into Twin Anemia Polycythemia Sequence (TAPS) is an evolving part of science and the medical world.  For a disease described only 15 years ago, we know more about it than ever, including things like the long-term effects, and international trials are working on finding the best treatment for it.  Of course, as we understand more about TAPS, the diagnosis and treatments become more refined. So let’s look at the (new) Leiden staging system for TAPS, and talk a little about why it’s here, and also a little about the history of it.

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One bad MCA doppler means…

one bad ma doppler means

The team here admit to one thing – we’re so passionate about getting MCA dopplers done that we push and push and push information at you, and tell you you MUST get them done.  We give you the tools to advocate and help you with wording and help bust those myths about TAPS screening.  And then, all of a sudden, you get one bad MCA doppler, and everything seems so dramatic.

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