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From reunions of parents to funding research projects, the TAPS Support foundation raises funds for different reasons.
On this page you’ll find information and updates about the projects we are raising money for, links to critical research, and breakdowns of how we spend the money we fundraise.
Quick Links To Our Main Projects
Existing Projects
Visit the TAPS Support Website. Here we’re raising the profile of Twin Anemia Polycythemia Sequence with easy to access information and sharing the stories of families diagnosed with TAPS.
Our Facebook community connects parents with one another, and `gives them a place to talk about the issues that are relevant to them. One of the things that is a common theme in our community is that parents often feel lost in a world of jargon. Many care providers dismiss TAPS as having the same outcomes as TTTS, and this isn’t true. We provide a safe, supportive space with access to the latest research, and break down barriers between researchers and doctors so that people can advocate successfully.
We worked with crochet designer, Nerissa Muijs of Miss Neriss to create a fun, sweet cuddly gift to give to TAPS families, and as a project for people to do! Meet Reti Koalacye here.
The Twin Talks Webinars are created to build a bridge between patients and researchers – we bring the experts to you to answer questions and talk live with patients – as well as open the floor for doctors to see the questions patients have about their diagnosis.
A diagnosis for an unborn child can be difficult and a lonely time. A Sweet Treat for fetal therapy patients is just a way to reach out to these families and let them know they’re not alone.
Other Projects
Current Fundraising Projects.
In March, 2021 we launched our first research project. We are raising money towards funding a part-time, post-doctoral position based at the LUMC in Leiden, the Netherlands. Rare disease research is often underfunded, and with creating this position, we hope to further continue the incredible research started by Dr. Lisanne Tollenaar.
Click the button below for more information.
Future Projects
Our future plans for projects within the foundation are:
- supporting future TAPS researchers
- extending existing TAPS research projects
- raising awareness of TAPS through websites, articles and media
- providing opportunities for TAPS families to connect, both online and in person.
Information About Projects by Stichting TAPS Support
For more information about our projects, or for information about volunteering with Stichting TAPS Support, get in touch.