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Not all twins are equal. The complications associated with monochorionic twins inspire our foundation to raise awareness of the differences in twin pregnancies and advocate for routine, standardized screening protocols worldwide. We want to bring positive change to the way twins are diagnosed, cared for, and improve their long-term outcomes.
This starts with raising awareness of Twin Anemia Polycythemia Sequence, advocating for policy changes worldwide, and creating meaningful dialogues between politicians, researchers, doctors, and TAPS patients.
We want the world to know that having twins isn’t always black and white.
Our inspiration comes from the quote above, from Professor Nicolaides, and a subsequent paper by Dr. Anthony Johnson, and Dr. Kenneth Moise, who ended with the powerful statement that “The diagnosis of “twins” is no longer acceptable.”
We are going to revolutionize the way multiple pregnancies are diagnosed, treated, and followed up through research, education, advocacy, connections, and hope.
Our Mission And Vision
Our foundation is dedicated to making a positive impact on the world of monochorionic twins, through education, connections, and research for doctors, families, and policymakers. We challenge outdated guidelines, empower parents to ask questions and advocate for the best care before, during and after a monochorionic twin pregnancy, and work towards creating better outcomes for twins worldwide.
The TAPS Support Foundation’s Mission
The TAPS Support Foundation’s Vision
Our Aims
Research into twins is continuously evolving, yet we still need to make many changes to how multiple pregnancies are diagnosed, treated, and followed up in the long term. We will make a positive, long-term impact in the world of monochorionic twins by upholding our mission and vision.
Our aim is to REACH this goal through our five fundamental pillars: Research, Education, Advocacy, Connections and Hope.
Research
Research is evolving, and we are committed to staying on top of and promoting current twin research.
We communicate with researchers, and enable the continuation of vital work through funding further research.
Our own commitment to research is to be up to date and actively involved.
Education
Education is vital. Our fundamental belief is to educate parents, professionals and policymakers on the issues surrounding monochorionic twins. From diagnosis, to delivery, and as the children grow, we will support and contribute to educating on the risks and long-term outcomes, but also the joys of having twins.
Advocacy
We empower parents to challenge outdated guidelines, and instead provide them with advocacy tools to elevate their care standard. Our own team works towards changing the myths and misinformation about monochorionic twin screening protocols and promotes updated, and the latest research into twins.
Connections
We build bridges between patients and research, and the relevant professionals who can help them.
We connect patients, creating life-long friendships united by our rare disease.
We embrace conversations with other organizations who hold similar beliefs and philosophies to our own, and calls them our friends.
Hope
Hope is a big part of our aims. It’s not only about bringing hope to families for an improved standard of care for their babies, but also for their future.
We hope to make positive change, and bring much needed guideline reforms and research.
Our families deserve the hope that research will continue, and give us more insight .
Our Core Values
We believe in honest, open communication to our members, our team, our stakeholders, our donors, and each other. Messaging should be clear, concise, factual and evidence based.
Financial transparency is vital. Not only in how we raise funds, but also how we spend your donations each year. We will be honest, open, and financially responsible.
We believe in inclusivity, and welcome everyone regardless of race, gender, religious beliefs, sexuality, and education. Our community thrives from the diversity of its members and the individual gifts they bring to us.
Our belief is that all members have an equal place in our community. Each individual brings something different to the table, and this cannot be ignored. We respect all outcomes, all decisions, and all families, and provide a judgement-free safe space. The world of twins is a difficult place, and it is our place to support all families, without judging the choices they made for their situation.
There is a strong need to remain up to date and on top of trends and research. We embrace the past, and what it has taught us, but we move with science and welcome new evidence-based research. Science saves lives.
We are all equals. From doctor to researcher, to patient, to families, we work as one united team towards our common mission, keep our vision in sight, and uphold our values. We work as a family.
Our Manifesto
These are our core beliefs. We:
- Raise awareness for Twin Anemia Polycythemia Sequence, a disease that is often misunderstood, misdiagnosed, and unfortunately too often, a missed diagnosis.
- Empower families to ask questions, advocate for care and for treatment, and to understand their diagnosis.
- Encourage open, frank discussion about monochorionic pregnancies and their challenges.
- Tackle medical jargon and turn it to everyday language so it is easy to understand.
- Bring unbiased real stories from all sides, from patient to care provider to researcher and advocate.
- Believe in making positive, effective changes in the way monochorionic pregnancies are handled and treated.
- Connect members with information, quality care providers, and a support network of caring individuals.
- Are volunteers with a shared passion and inspired by our own personal journeys, we advocate for not only the minimum standard of care but a superior standard of care.
- Share one idea – no one should be alone in their diagnosis. We are the faces of TAPS – survivors, losses, researchers, parents, and advocates.
#TAPSisReal