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Our disease is all about tiny connections that have a big impact on those who are diagnosed with TAPS. Likewise, we are passionate about connections, and how even the tiniest connection can make a huge impact on someone’s life. It’s all about encouraging and fostering these connections in a positive way to make a change in the lives of our families.
Patient Connections
One of the biggest achievements we have is that we’ve created a thriving Facebook Community for TAPS patients, but also for researchers and doctors. This closed, safe community gives patients the opportunity to connect and share stories, but also for providers to see the concerns and the questions that their patients have.
Our group now has 600 members and is growing weekly – and provides a safe, closed discussion forum for those needing a place to talk about TAPS-centric issues.
Visit our Facebook Community Here.
Research Connections
We are absolutely blessed with having an incredible, world-renowned research team behind us, not only ensuring we have the latest research, but also that we maintain high quality and factual information about Twin Anemia Polycythemia Sequence. Our team connects weekly to discuss issues and connect – our shared passion fuels our desire to make sure the world has the best information about TAPS.
But it doesn’t extend only to patients. We’re also committed to connecting researchers and doctors to each other – and over the past year, we’ve done this! Through our website, social media, and Twin Talks Webinars, we’ve connected people from 19 different countries to researchers, made vital research connections and partnerships, and promoted and fostered interactions between leading researchers and hospitals across the world.
Read more about one example of connecting hospitals to researchers here.
Social and Visual Media
We connect the world with our social media and video channels. We promote research, talk about the issues our parents face, bust the myths about TAPS and share facts and information. It’s about connecting people, and research to each other in accessible ways.
Discover all our social media channels below.
Partnerships
The last part of our connections is partnerships. Advocacy isn’t something you can do on your own, so we work with organizations that share similar values to us. From active memberships, to working with foundations that have mutual interests and goals, we’re committed to raising awareness of the issues that face twins, starting with TAPS.