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!
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.
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 ;).
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.
One of the things about TAPS that is always thrown around is how rare it is. (It’s one of the tired myths as well – why should we screen for it because it’s so rare? ) . There’s so little common understanding about it, and even in the medical field we’re met with the argument “Oh, you had TTTS?”