Taps Support Foundation

The TAPS Support Foundation helps raise much-needed funds for research into Twin Anemia Polycythemia Sequence (TAPS), as well as helps break down the barriers between research and patients. They provide evidence-based materials for free to patients, and opportunities to connect with others diagnosed with TAPS.
Started by Australian mum Stephanie Ernst after her daughters were born with Stage 3 TAPS, it has become her passion project to make sure that no one ever feels alone or lost with a TAPS diagnosis.

We started a foundation this year as funding into rare diseases is seriously lacking, and particularly twin research. Next year we’re hoping to raise €10,000 to fund a part time TAPS researcher!

We also run a free advocacy webpage designed to help families understand their diagnosis and give them resources here – www.tapssupport.com. Our primary focus is breaking down the walls between research and everyday people, and also making sure they understand what their diagnosis is!