Latest Appearances
Interested in what I have to say? Here are some of my appearances and interviews with different groups and organizations. Want to work with me? Check out my speaker page, where you’ll find my bio, topics, and how to get in touch.
Upcoming events:
Confirmed: Manchester, October 2024 – Twin parents in the NICU
Recent Appearances:
GEFOG Health Foundation Twin and Multiple Pregnancy Academy
March 10th, 2024. Expert Patient panellist on : “NIPT in twin and multiple pregnancies”
GEFOG Health Foundation Twin and Multiple Pregnancy Academy
July 21, 2024. Expert Patient panellist on “Preterm birth in twin pregnancy: controversies and guidelines”.
The Red and White Twins: The Story of a Foreign Parent With Complicated Twins in a Dutch NICU
Flevoziekenhuis, Almere, 4 April, 2023 ;
LUMC, Leiden, December 18, 2023
HMC Westeinde, June 6th, 2024
Being a parent of preterm twins, born with a rare disease in a foreign country isn’t that easy. In this one hour presentation I shared my story across 2 NICUs, and some insights on how to better support parents in any or all of these situations.
Coming soon
Tvillingrådet
Conversations in Fetal Medicine Podcast (with Jane Currie)
In conversation with Stephanie Ernst (TAPS Support) – published 6 June 2024
Canadian Premature Babies Foundation (CPBF) Preemie Chats
“From Clicks to Clarity: Navigating a Complicated Twin Pregnancy Online” – Speaker and Panelist
GEFOG Health Foundation Twin and Multiple Pregnancy Academy
March 10th, 2024. Expert Patient panellist on : “Understanding TAPS: Challenging Case Scenarios”
GEFOG Health Foundation Twin and Multiple Pregnancy Academy
Feb 25th, 2024. Expert Patient panellist on “Antenatal steriods in twin pregnancies”.
TAPS: What Is It, And Why It Really Matters When Pregnant With Twins
Twiniversity Podcast with Natalie Diaz
Medics4RareDiseases
Episode: The Patient, The Placenta, and The Passion For Rare
I talked with Melissa Clasen of M4RD, about TAPS, twins, and the need to raise awareness of rare diseases. 59 minutes.
TAPS and Identical Twins—raising awareness, sharing hope. March 3, 2022
Author Nichola Luther launched her book “TAPS, Identical Twins and Covid” on International TAPS Day, 2022. Together with Nichola and Prof. Asma Khalil, we discussed aspects of Nichola’s book, as well as the need to change the way we talk about TAPS.
Japan Society For Twin Studies: 36th Annual Congress
21 January, 2022. Topic: TAPS Support- A New Form of Twin Advocacy.
In this 20 minute presentation, I was honored to present to Japanese delegates about the importance of screening for TAPS, as well as sharing patient perspectives, the work of TAPS Support, and the importance of an accurate diagnosis for families. I also participated in a panel discussing TAPS diagnosis and its impact on families.
Recording unavailable for public viewing
The Rare Fair, January 12, 2022
Panelist: Oversharing: Managing Your Social Media with your Child in Mind
Together with the Rare Revolution Magazine team, my role as panelist was to discuss finding a balance between oversharing and sharing online to raise awareness for rare diseases as parents.
19th International Congress on Twin Studies- Budapest
November 11-14, 2021.
Panelist: “Participant Engagement And User Involvement In Twin Studies”. With my co-panelists, we discussed the challenges in engaging patients in twin studies and the importance of patient perspectives.
Fetal Health Foundation
In this webinar, held in November 2020, I was a panelist discussing why a dedicated foundation for TAPS was needed, and about what fuelled my passion to create this. Other panelists included Lonnie Somers of the Fetal Health Foundation, Dr. Enrico Lopriore, and Dr. Femke Slaghekke.
Talking TAPS with Twiniversity
Appearance on Twiniversity: Talking with Natalie about TAPS. March 5th, 2021
Chatting with Natalie Diaz, the founder of Twiniversity, one of the most comprehensive and amazing online resources for twins was a highlight. In this episode, we discussed the reasons why TAPS screening is so important and shared some insights into my story.
Bloggers Battle
Here in Holland #5: Blogger’s Battle
One of the most difficult, yet amazing experiences I had was recording this podcast with Andy Clark. Sharing your story is a challenge for the first time, and Andy made it a wonderful, engaging experience. Other interviewees: Dr. Enrico Lopriore.
TAPS Symposium
The One With The Symposium Speech – first presented at the first international TAPS Symposium on October 28th, 2014.
This was a highlight, just 10 months after the birth of my girls I was invited to share their story, and my own patient journey with the very first TAPS Symposium held.
Whilst no recording exists, I shared the speech I gave on my blog.
Speaker bio
Stephanie Ernst, an Australian-born, Dutch-by-choice writer, speaker, and patient advocate, lives 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.
To discuss having me speak at your function, or in your webinar, contact me at info@stephanieernst.nl, or via my contact page.
Let’s work together
To discuss how we can work together, click the button below to contact me.