Stephanie E. Email & Phone Number

Almere, Flevoland, Netherlands

I know only too well the challenges that multiple birth families face within the medical community. However, there are definitely ways that we can reduce the ways that a complicated multiple birth can impact families, and facilitate a better experience for these patients. What I can bring to you is the patient perspective, and the experience of a twin parent who has seen not only a complicated pregnancy and rare disease diagnosis, but a lived NICU (neonatal) experience with pre-term twins , and 10 years of experience navigating the medical system within prematurity and rare disease diagnoses.I am passionate about patient involvement within research, and believe that the way of the future is patient-centric trials. One of my unique skills is to break down the barriers of medical jargon, to make it accessible for patients, and to work with the medical community to improve outcomes through clear, authentic communication. After all, we're all working with one goal in mind - your health. I have writtten widely on the issues that face rare disease patients and parents, as well as twin parent experiences, and speak regularly on these issues within the medical, professional and parent world. There is a common belief that the world of twins is all matching outfits and cute babies, and the reality is that it's much more complicated than that. Families face a lot of uncertainty, and stress, and I work towards bringing these issues into the public eye, so that there is more awareness of the additional needs and support for multiple birth families, and their unique challenges. I've worked with many high profile research teams as both a consultant and research assistant, providing my patient perspective and an expert twin parent experience to create research topics that matter to the twin community.(Sometimes I also do content marketing and writing. I love big words and writing for your company. We can always talk about that too!)

Amsterdam Area

Almere, Flevoland, Netherlands

From raising awareness of the complications of twins, to supporting families through a diagnosis, my passion is to continue research into Twin Anemia Polycythemia Sequence (TAPS) and related diseases, as well as to help families advocate for proper care before, during, and after their diagnosis.As a patient expert, I bring the perspective of twin parents diagnosed with our rare disease to experts and medical professionals, and share our points of view with a complicated diagnosis. It is my belief that together, we can improve outcomes for twins through clear, concise communication free of jargon. As a fundraiser, I am well aware that there is no money in rare disease research! This is why I am passionate about raising funds for further research into twins and continuing necessary research into complications like TAPS, TTTS, and SFGR. As a research assistant, I take a deep dive into the existing research on these complications, and help you catalogue and develop research questions that the wider patient community want answered. It is truly my belief that research must include the perspectives of patients, and that together we can create the research of the future.

I know how daunting it can be to hear the words "Congratulations, it's twins!" Through online courses and training sessions, I share my lived experience as a twin parent with others. My courses are practical tips designed to ensure that families can live their best possible life with their multiples, and create more moments for family bonding and less stress in daily routines.During this time I have received 5 star feedback on my courses, and have experienced many positive stories from families who have implemented my ideas. I have learned that it really is about community when it comes to raising multiples, and sharing our perspectives as parents, and talking openly about the challenges we face can help others.