The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin pregnancies are diagnosed, handled, and treated, as well as raising the profile of Twin Anemia Polycythemia Sequence (TAPS).
Days Until International TAPS Day – March 3rd, 2024
Why March 3rd? That’s the day our rare disease got it’s name – Twin Anemia Polycythemia Sequence (TAPS). On this date, we recognize the research and the need for improved screening worldwide, as well as long term followups. Learn more on our website – www.tapsday.com
Upcoming Events:
The upcoming EAPM Online Course is approaching fast! Mark your calendar and join us on 30 November 2023 for this engaging online learning experience.
The course’s programme is divided into four sections: covering a general overview on Monochorionic twins, Twin-Twin Transfusion Syndrome (TTTS), Twin Anemia Polycythemia Sequence (TAPS), Selective Fetal Growth Restriction (sFGR).
There will be case discussions, interactive survey, and interactive Q&A sessions with participants.
Course Faculty: Enrico Lopriore (The Netherlands), Sophie Groene (The Netherlands), Mariano Lanna (Italy), Eleonor Tiblad (Sweden), Jeanine van Klink (The Netherlands), Femke Slaghekke (The Netherlands), Lisanne Tollenaar (The Netherlands), Liesbeth Lewi (Belgium).
Who Are TAPS Support?
We raise funds for research and help families diagnosed with TAPS advocate for care before, during, and after pregnancy.
What is Twin Anemia Polycythemia Sequence (TAPS)?
A relatively new disease only researched in the past 15 years, TAPS is often misunderstood and misdiagnosed. Worst of all, it can be a missed diagnosis. There are 2 forms of TAPS, spontaneous, and after laser surgery for TTTS.
Because of a lack of guidelines and many myths supporting routine screening for spontaneous TAPS, despite years of research, many parents are denied essential checks.
What Does The TAPS Support Foundation Do?
Our primary goal is to break down the barriers between research and patients. Patients should have access to research that can help them advocate for care, as well as easy access to resources that can help them get the treatment they need.
We do this via our active Facebook Group, where our volunteer moderation team takes care of our families and shares their own experiences. What’s also unique about our group is the addition of active researchers and care professionals who support our moderation team. We ensure that the group values are upheld, and the information given is correct and up to date.
Supporting Research into Twin Anemia Polycythemia Sequence
We also actively support research into Twin Anemia Polycythemia Sequence, with fundraising and educational opportunities with our advisory team. We’re up to date with the latest research, meaning our members have the newest research as it comes out. For us, providing good quality and accurate, current information to our members means everything.
We create resources for patients as well, with regular articles and stories coming out. We also create informational pages designed to break down the walls of jargon between patients and doctors.
Is Your MFM Your BBFF?
One of our crowning achievements is the creation of the Is Your MFM Your BBFF? campaign, specifically designed to make it easy for people to remember the tests they need. It’s all about checking the brain, bladder, fluid, and flow of each baby every 2 weeks.
Changing The Perception of Twin Anemia Polycythemia Sequence
We advocate for consistent, competent care for all monochorionic twins. Our team is passionate about creating awareness for TAPS and its complications, treatments, and care.
Our volunteers create a bridge from research to the patient. This ensures that everyone can understand and advocate for correct and appropriate care for themselves.
Our determination is to raise the profile of Twin Anemia Polycythemia Sequence and associated disorders across the world. We want to ensure that people are aware that there are treatments. Most importantly, you need to know that you are not alone in your diagnosis.
We support research and researchers, understanding that they are crucial to our quest.
Our Mission
The most important part of our mission is to make people aware that not all twin pregnancies are the same, and you are your babies’ advocate for care. We will equip you with the resources you need to get that minimum standard of care.
Want to know more? Contact us at hello@tapssupport.com
