This weekend during the Leiden Marathon, more than 30 parents, children, doctors, researchers and members of the public will run to raise money for the Well Bee Study. This important…
Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…
March 3, 2022 is being recognized at International TAPS Day, a time to spread awareness among the general public and the medical field about twin anemia polycythemia sequence (TAPS) a…
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 innovative collaboration, the TAPS Support Foundation and the Fetal Therapy team from the Leiden University Medical Center announced today a new joint initiative – The Twin Talks Webinar…
When Stephanie Ernst-Milner first discovered that she was having twins, she was speechless. But what she learned over the course of her pregnancy, and in the seven years since, has…
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…
At first, everything in Amberlyn Smith's pregnancy seemed to be going smoothly. When she was just over 29 weeks pregnant, her screening tests appeared to be normal. However, at…
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