Speaking
From discussing my experience as a TAPS patient to speaking about creating an online community, I’m happy to talk to you about my passion. Your next event needs a speaker who can talk from the heart, bring in some humor, and speak with empathy and enthusiasm.
Speaker Bio
Stephanie Ernst is an Australian-born, Dutch-by-choice writer, speaker, and patient advocate, living in the Netherlands.
Her daughters, born at 31 weeks, are the faces of Twin Anemia Polycythemia Sequence (TAPS). After struggling to find quality information on TAPS, Stephanie created a Facebook community that evolved into the charity TAPS Support.
Her aim is to promote research into the complications of monochorionic twins, raise funds for research projects, and support future researchers. She emphasizes the importance of parents being active members of their care teams by providing clear, accessible information and breaking down medical jargon.
Stephanie actively publishes research with other TTTS mothers, and frequently writes and speaks on twin-related topics. She works in marketing for companies involved in clinical research, training, and coaching. In her spare time, she enjoys spending time with her twins and patient husband, drinking coffee, and occasionally indulging in a G&T.
Stephanie’s passion for myth-busting twin complications and building rare disease communities drives her continued advocacy and research efforts.
Topics
Multiple births and the
Neonatal Unit – what are the considerations?
Topics: Challenges faced by parents in the NICU, considerations for multiple births, talking with twin parents.
In this presentation, I’ll share my own journey in the NICU, presenting insights from the perspective of parents of complicated twins and multiples. Families with multiples face unique challenges and considerations distinct from those with singletons. I’ll guide you through these special aspects, highlighting the experiences, hurdles, and triumphs that are part of navigating the NICU with twins or multiples.
Online communities and finding the right information
Topics: Community Building, Finding Quality Information, Pitfalls and Pros of Social Media.
Drawing from my personal journey eight years ago, when I felt isolated with my diagnosis, to now being part of a thriving online community focused on a rare disease, I can confidently attest to the transformative power of these virtual spaces. Online communities and quality information have been lifelines for many, including myself. Creating safe, respected online communities isn’t as daunting as it might seem. Let me show you how simple steps can foster a supportive, empowering environment for those who need it most.
Visit my “Latest Appearances”page and check out the presentation for the CPBF “From Clicks to Clarity” for a sample.
Patient perspective on a rare disease diagnosis (multiple births)
Topics: What patients want to know, talking with patients
As a parent navigating the medical system with children diagnosed with a rare disease, I’ve often found myself the unexpected “expert” in the room. I’d love to share my journey, offering insights into patient experiences, tips on advocating effectively, and approaching experts for accurate diagnoses.
I bring a unique perspective on how patients respond to diagnoses and what they need to hear from medical professionals—whether the news is good or bad. When expecting multiples, the flood of medical information can be overwhelming, turning us into reluctant experts in a new, complex language. We naturally focus on worst-case scenarios, so let me help you communicate so patients feel more at ease and informed.
Visit my “Latest Appearances”page and check out the podcast with Natalie Diaz of Twiniversity – TAPS: What Is It, And Why It Really Matters When Pregnant With Twins for a sample
Parenting Twins
Topics: Multiple Pregnancies, Parenting Twins, Raising Multiples, Twin Parenting Tips.
Ever wondered what it’s like to parent twins? Let me bring my unique humor and insights into the world of parenting multiples. From “sharenting” to having to change the perceptions of care teams on prematurity and rare diseases, along with stories about escape artists, battling constipation, and that flying incident, I’d love to tell you more.
Patient-centric research
Topics: Approaching Patient organizations, collaboration in research, patient-centric research
Let me discuss the vital role of collaboration and cooperation between patient organizations, parents, and researchers. With regulations like the EU CTR and ICHGCP R3 emphasizing patient input in clinical research, our collective efforts have never been more crucial. By working together, we ensure that research truly reflects patient needs and experiences. I’ll share insights on how we can build these partnerships, and make sure every voice is heard, transforming clinical research into a more inclusive, patient-centered endeavor.
Visit my “Latest Appearances”page and check out the podcast with Jane Currie – Conversations in Fetal Medicine Podcast for a sample.
Speaking Engagements With Stephanie Ernst
To discuss having me speak at your function, or in your webinar, contact me at info@stephanieernst.nl, or via my contact page.
Get in touch
Ready to make some magic happen? Drop me a line, and let’s chat. Whether you have a question, a brilliant idea, or just want to say hi, I’m all ears and excited to hear from you. Click the link below, fill out the form, and I’ll get back to you in no time.