We are happy to announce that a new parent organisation has joined our network: The TAPS Support Foundation from the Netherlands! The TAPS Support Foundation is dedicated to raising awareness about TAPS, an acronym for Twin Anemia Polycythemia Sequence, and advocates in favour of changing the way monochrionic pregnancies are diagnosed and treated.
TAPS is a rare disease that affects twins who share a placenta. Somewhere in the placenta, a small surface connection causes red blood cells to slowly pass from one twin to the other. Over time, the twin whose red blood cells are passed on becomes chronically anaemic whereas the twin receiving the excess red blood cells becomes polycythemic, i.e. suffers from an increased blood volume. It means that neither twin’s blood is in a healthy state, leading to many serious short- and long-term complications. Preterm births are also likely.
The TAPS Support Foundation grew out of Stephanie Ernst’s advocacy following the 2013 preterm birth of her twin daughters who were first diagnosed with stage 1 Twin to Twin Transfusion Syndrome (TTTS) and then started to developed TAPS afterwards. Realizing that there was only little information available and research still in its infancy, Stephanie continuously spoke and wrote about her experiences and kept in touch with the medical team which had helped save her daughters’ lives in 2013. Out of this engagement, The TAPS Support Foundation was finally born. One aim of the foundation’s work is to foster and secure research into TAPS to empower patients and their families to make informed choices.
Welcome aboard, The TAPS Support Foundation! We look forward to working together with you for babies born too soon or too ill and their families.