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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!

Continue reading “ORPHA… What?”