Who am I? I'm Stephanie Ernst, TAPS nerd and founder of the TAPS Support Foundation. My passion for raising awareness for Twin Anemia Polycythemia Sequence comes from my own TAPS journey. My daughters were born at 31 weeks at the LUMC in Leiden, and my mission is to support research into TAPS, as well as connecting families diagnosed. Everyone should have access to the latest information and research about TAPS so they can advocate for the best level of care. And most importantly, no-one should ever be alone in their TAPS journey. Find our Facebook group here.
Receiving a diagnosis can be difficult, and when you add into the equation that it’s for a rare disease, it can be a very lonely and isolating time. There is…
A rare disease diagnosis changes your life. As I look back on eight years of twin anemia polycythemia sequence and its impact on my girls, I also have to reflect…
In an earlier article, I've spoken about the power of Google and how it can benefit both patients and medical providers. Through the power of the internet, advocates can help…
In 2006, a new, rare disease affecting monochorionic twins was identified and named. Twin Anemia Polycythemia Sequence (TAPS) changed the perception of the complications of monochorionic twins. It started redefining…
Twins have always been a thing that has mystified the world, intrigued people, and definitely a curiosity. Fraternal, Identical, and everything in between – multiple births are a source of…
In this digital age, rare disease issues have become more prevalent and more visible. According to Eurordis, a rare disease affects less than 1 in 2000 people. There are more…
In a previous article, I talked about the importance of patient-led advocacy groups and how they can positively impact how a rare diagnosis is received and understood by patients. Do…
First of all, a little about me. I’m an Australian, living in the Netherlands with my German husband and our 6-year-old, identical twin daughters. We’re a pretty average family, living…
Running a foundation for a rare disease isn’t always an easy thing. I receive emails daily asking me for information about Twin Anemia Polycythemia Sequence, a rare disease of monochorionic twins affecting just…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
