advocacy Archives - TAPS Support

January 21, 2020January 22, 2020

TAPS Support Fast Five: Dr Dick Oepkes

taps support dick oepkes twin anaemia polycythemia sequence syndrome twins

Welcome to a new series of blog posts by TAPS Support. Our team is passionately following research, but we felt it was time to dive deeper into the stories of the people behind Twin Anaemia Polycythemia Sequence. It’s time to introduce the TAPS Support Fast Five, and this week we’re introducing Prof. Dr Dick Oepkes

In this series, we talk to the researchers and doctors who have dedicated their lives to researching not only TAPS, but other conditions and diseases affecting monochorionic twins.

January 7, 2020January 9, 2020

Why “fine” can be a bad word.

On our social media and in our group recently we asked the question “What word/s do you dislike the most?”

It sparked some interesting conversations, and it appears that the word “moist” is pretty universally disliked. You can’t argue with a statistic like 18/100 people stating that they don’t like it!

December 8, 2019December 13, 2019

Dear MFM

As a patient’s MFM you are her lifeline – literally.

You have the knowledge, access, and ability to implement the resources necessary to give her pregnancy the best chance for a positive outcome.

We describe the MFM as the leaders of the monochorionic health care team. Your advanced training, experience and, again, access to vital resources often positions you as the Big Decision Maker.

December 3, 2019December 8, 2019

Making your MFM your BBFF

MFM BBFF TAPS Support twin anaemia polycythemia sequence testing monochorionic modi twins

Ok, TAPS Support Admin Team … Are you quite ok there? Making my MFM my BBFF? What? Are you into the Christmas “Spirit” early?

(admin note: No, we’re not! We’re just really excited about our latest campaign)

This year we want you to make the resolution to make sure your MFM is your BBFF. So let’s talk about what we mean by this.

September 25, 2019December 8, 2019

TAPS Support: A New Type of Advocacy

taps twin anaemia polycythemia sequence advocacy support

Traditionally, health care advocacy groups, like ours, begin with people fighting to have established clinical guidelines followed. But what happens when you’re starting from scratch, and there are very few established clinical guidelines, and an establishment that refuses to accept research?