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International TAPS Day recognizes the research and educates others about TAPS and related diseases. Since the publication of the very first paper naming our disease on March 3, 2006, TAPS has been a controversial diagnosis, shrouded in myths and misunderstandings.
TAPS Awareness Day on March 3
Over the past 18 years of research into Twin Anemia Polycythemia Sequence (TAPS), significant updates and changes have been made to how we diagnose and treat this rare disease affecting monochorionic twins. However many myths and misunderstandings about TAPS exist, and this year we want to create an open forum for educating parents and professionals.
During the period of March 1st to 9th, we’ll be running a campaign about TAPS, from diagnosis, to delivery and beyond, talking about the changes in diagnostic criteria, considerations for TAPS twins at birth, and the need for long term follow-ups.
Educating Professionals
As well as this campaign, during the month of March we plan to run a series of webinars for professionals on TAPS, TTTS, and SFGR, with the intent to update everyone with the latest knowledge on monochorionic twin complications. This will be supported by, and held in conjunction with the incredible Fetal Therapy team at the Leiden University Medical Center.
Our proposed agenda is as follows:
Week 1 (March 3-9) TAPS
Week 2 (March 10-16) TTTS
Week 3 (March 17-23) SFGR
Week 4 (March 24-30) – The impact of complications on families, and twin loss.
On April 7, we will also have a day of recognition for loss in multiple pregnancy – more on this to come.
Tickets will be available shortly, with pre-registration already available here.
We anticipate the cost to be around €75 per place, with proceeds going directly to fund the Well Bee Study.
About the Well Bee Study
The Well Bee study aims to investigate the impact of a complicated monochorionic multiple pregnancy on the quality of life of their families. They have to deal with fear and uncertainty about the health and survival chances of their babies, both during pregnancy and after birth.
This might lead to a high degree of stress and depressive thoughts. In the Well Bee Study, the LUMC will talk to parents to find out how they experienced this time. They will try to find out what helped them, and what they missed. With this, the LUMC hopes to be able to better help and support parents of complicated multiple pregnancies in the future, thereby improving the well-being of both the parents and their pregnancies.
Free Parent Information Sessions
As part of the activities around International TAPS Day, we are also planning a series of free parent information sessions, designed to update parents on the latest research and what the longer term holds for their children.
These sessions will also include experts and are designed to answer parents’ questions about their diagnosis in plain language. We believe that breaking down the barriers that exist between the research and medical world, and the patient community is integral for improving patient well-being, and educating everyone on essential knowledge. These webinars are provided for free, with leading experts available to talk about the questions patients want to know.
Pre-registration is available here, with more information to follow in the new year regarding session times and topics.
Volunteering for International TAPS Day activities
We’re always keen to have both families and professionals volunteer to provide their insights, quotes, videos and research to our TAPS awareness day activities. If you’d like to share your story, your innovative research, or a video about the need to educate the world about Twin Anemia Polycythemia Sequence, please get in touch with Stephanie – +31 629 841 203 or stephanie@tapssupport.com
Interested in participating in our events as a professional? Get in touch.
Feel free to download our images to use on your social media – please do not alter without consulting us. Custom images are also possible.
Sponsorship Opportunities
Sponsorship opportunities do exist for International TAPS Day, with funds needed to cover the administrative costs of running the day, and the expenses of those involved with the program, including advertising, design and travel. Your company could help us spread the knowledge about TAPS further, with a donation as small as €250 (but not limited to this amount!).
As an official sponsor of International TAPS Day, you’d receive recognition in our social media and on our website, and the opportunity to reach thousands of professionals and families worldwide with your message and show community support to twin and multiple birth families.
If you’re interested in helping us educate the world on Twin Anemia Polycythemia Sequence, please email our team at hello@tapssupport.com .