We are so excited to announce a new project of ours – the Twin Talks Webinars. Built around frequently asked questions in the twin communities, this innovative collaboration between the TAPS Support Foundation and the LUMC, Leiden means that parents have access to leading researchers, and on the flip side, doctors can see the questions their patients have about Twin Anemia Polycythemia Sequence (TAPS), and the discussions they want to have with their doctors.
Twin Talks Webinars
The first webinar, Twin Anemia Polycythemia Sequence 101, will cover the fundamentals of TAPS – diagnosis, treatments, and short and long-term effects, and moderated by Stephanie Ernst; it will feature experts like Prof. Dr. Enrico Lopriore, Dr. Femke Slaghekke, Dr. Lisanne Tollenaar, Dr. Joanne Verweij, and Dr. Jeanine van Klink. The team also hopes it will help clear up some perpetual myths about this rare disease.
Dr. Joanne Verweij, from the Leiden University Medical Center in Leiden, the Netherlands, says
“The only way to improve care is to involve patients and work with them, especially when it comes to rare diseases. This contact is so important, as often you don’t hear all the details in the hospitals. When patients connect, we often discover topics that would have not been discovered, and this is often because they’re unsure of what they’ve been told, and seek peers to clarify information.”
A first for both organizations, the webinar will also share a patient’s experience in being diagnosed with TAPS and its impact on their life. This is a vital step in combining the patient experience with expert information.
TAPS parent Bethany Beck, from Ohio in the USA, says, “I’m so honored to be able to share the story of my girls. Advocating for them while pregnant was hard and scary and continues to be that way as they grow up in a world of unknowns about their future wellbeing. Speaking about our story gives them a voice and every other person affected by TAPS a voice.”
These webinars are designed to bridge the information gap between doctors and patients and help raise awareness of TAPS. For patients, information is delivered by world-leading experts from the team who named it, and for doctors – valuable insights into patients’ minds and the questions they have about their diagnosis.
Don’t miss out! Join the Webinars here!