Stephanie E. Email and Phone Number
Stephanie E. personal email
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You’ve seen the quote from Josh Billings in my profile - “There are two things in life for which we are never truly prepared: twins.” I’ll be honest with you here – I definitely wasn’t prepared for it at all! However, this has given me a unique skillset that can help both parents and medical professionals be prepared for the unique challenges that multiple birth families face.After being diagnosed with Twin Anemia Polycythemia Sequence during my pregnancy, and realizing that there really is a lack of patient perspecitives out there about complications in multiple births, I started sharing my twin parent experiences through writing. What this led to was creating a foundation that is dedicated to improving outcomes in twins, and empowering twin parents to advocate for their babies and the specialized testing we need. I raise awareness within the rare disease and wider community about the challenges faced in multiple births. I also provide essential parent perspectives to the research community in order communicate our experiences, and improve outcomes for our families. I speak to parents about their needs, help them advocate for appropriate care before and after birth, and break down medical jargon to real language. For medical professionals, neonatal units, and other organisations, I bring an experienced twin parent voice, and share patient insights, the point of view of vulnerable parents, and discuss the additional needs of multiple birth families across the entire experience - from that first "Congratulations, it's twins!" through pregnancy, birth, and beyond. Becoming "twin-friendly" means changing your perspectives a little bit (or a lot!), and this can be easily done by listening to the twin parent perspective that I offer.Patient experiences are a valuable key for research opportunities and facilitating better communication. As an experienced research assistant, I bring my perspective to your research proposals, grant applications and academic works, and help you bring outcomes that are relevant to patients, and their needs. I am also a passionate advocate for patient involvement in research, and want to work with you to ensure that your research is of the highest standard, and leads to better clinical outcomes with less communication breakdown. Ready to take a twinspired look at the world of multiple births, or in need of a twinsplaining parent advocate? Let's twinfluence together - get in touch.
Beequeen
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Independent ConsultantStephanie Ernst Consulting Feb 2018 - PresentAlmere, Flevoland, NetherlandsI 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!)
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Marketing Content SpecialistBeequeen Jun 2024 - PresentAmsterdam Area -
Founder And Taps NerdThe Taps Support Foundation Jun 2020 - PresentAlmere, Flevoland, NetherlandsFrom 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. -
InstructorBabysparks Feb 2022 - PresentI 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.
Stephanie E. Skills
Frequently Asked Questions about Stephanie E.
What company does Stephanie E. work for?
Stephanie E. works for Beequeen
What is Stephanie E.'s role at the current company?
Stephanie E.'s current role is TAPS Nerd | Twinfluencer | Digital Raconteuse | Content ArtisanFacilitating conversations on the needs of multiple birth families and specialized in content marketing. Ready to connect? Let’s chat!.
What is Stephanie E.'s email address?
Stephanie E.'s email address is sv****@****ail.com
What skills is Stephanie E. known for?
Stephanie E. has skills like Customer Service, Stakeholder Management, Governance, Social Media, Change Management, Microsoft Excel, Project Planning, Strategic Planning, Business Analysis, Coaching, Team Leadership, Management.
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