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!
Continue reading “ORPHA… What?”
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.
Continue reading “A letter to Autumn.”
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!
Continue reading “15 Research Milestones For Twin Anemia Polycythemia Sequence (TAPS)”
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.
Continue reading “Congratulations Dr. Tollenaar: A New Era Of TAPS Research”