Speaking

From talking about her experience as a TAPS parent to the challenges of raising twins, and building online rare disease communities, Stephanie Ernst is available for your next speaking engagement.

If you’re looking for an active, engaging speaker who can speak about building online communities, a passionate patient advocate who has taken the plunge into research and building a foundation or a twin parent who’s passionate and enthusiastic about raising multiples, read on to discover how we can work together.

Advocacy In Action

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.

stephanie ernst speaking

Twin Parents in the NICU

Topics: Challenges faced by parents in the NICU, considerations for multiple births, talking with twin parents.

In this conversation, I’ll share my own journey in the NICU, and present insights from the perspective of parents of complicated twins and multiples. There are additional considerations for these families, which are different to singletons that should be discussed, and in this presentation I’ll take you through these.

Creating Online Communities

Topics: Community Building, Rare Disease Communities

From my own experience 8 years ago, when I felt like I was the only one with my diagnosis, to a thriving online community focussed on a rare disease, I firmly believe in the power of finding your online family. Our community is built based on transparency, trust and advocacy, and a little disfunction – just like a real family. Creating safe, respected online communities doesn’t have to be difficult.

Patient Led Advocacy

Topics: Doctor/Patient Communication, Patient-Led Advocacy Groups

I’m passionate about breaking down the doctor/patient barriers, and will lead a rousing conversation about the benefits of patient-led advocacy groups, and how we can work together to bring change to the way doctors and patients interact.

I also can bring a unique point of view to your symposium by talking about how patients respond and react to a diagnosis, and what we need to hear from you when you’re delivering news – good or bad.

TAPS Diagnosis

Topics: Twin Anemia Polycythemia Sequence, Patient Communication

I’m up to date with TAPS research, and able to explain this rare diagnosis in everyday terms, because I believe that information should be accessible to everyone. TAPS-splaining is a passion of mine, and I can help your patients understand their diagnosis, and help them communicate their concerns to you.

Rare Disease Advocacy

Topics: Finding Research, Connecting With Experts, Advocating for Care.

As a parent of children diagnosed with a rare disease, I’ve heard it all. I would love to share my experience as a parent navigating the medical system with a disease that no one has heard of, and often being the “expert” in the room. I can offer insights into patient experiences, tips on how to advocate without losing your cool, and approaching experts to help you get a diagnosis.

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.

Testimonials

    Teralynn Benett
    Teralynn Benett

    TAPS Parent

    Stephanie can effectively read and address the audience in a manner that can be easily understood by all. She takes difficult medical jargon and explains it thoroughly without leaving the audience feeling as though they’ve missed anything. She can answer questions as they are asked while still ensuring her key points are not missed and maintaining professionalism

      Prof. Asma Khalil
      Prof. Asma Khalil

      Professor of Obstetrics and Maternal Fetal Medicine

      I would like to express my gratitude towards Stephanie and all her efforts focusing on twins. Her contribution in sharing her personal experience as well as her knowledge related to TAPS has been highly appreciated by parents and healthcare professionals. Stephanie’s outlook towards this complex condition has provided us with a unique perspective on the parents’ standpoint. Stephanie has been a valuable member of the team during our recent twin webinars. We have received a lot of positive feedback regarding her contribution. We applaud her emphasis on the need for focused efforts to investigate the potential therapies of TAPS (and other complications in twin pregnancy), as well as, following up the babies after birth. We look forward to working with her more closely to save twins’ lives and improve the outcomes of twin pregnancies.

      See And Hear Me

      Interested in what I have to say? Here are some of my appearances and interviews with different groups and people.

      Upcoming events:

      Confirmed: Manchester, October 2024 – Twin parents in the NICU

      Recent Appearances:

      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: Multiple Births Special May 31 – “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”

      Recording available after registration here.

      GEFOG Health Foundation Twin and Multiple Pregnancy Academy - March 10th, 2024. Expert Patient panellist on : "Understanding TAPS: Challenging Case Scenarios" stephanie ernst

      GEFOG Health Foundation Twin and Multiple Pregnancy Academy – Feb 25th, 2024. Expert Patient panellist on “Antenatal steriods in twin pregnancies”.

      Recording available after registration here.

      GEFOG Health Foundation Twin and Multiple Pregnancy Academy - Feb 25th, 2024. Expert Patient panellist on "Antenatal steriods in twin pregnancies".  Stephanie Ernst

      TAPS: What Is It, And Why It Really Matters When Pregnant With Twins – Twiniversity Podcast with Natalie Diaz (Video Recording)

      TAPS: What Is It, And Why It Really Matters When Pregnant With Twins – Twiniversity Podcast with Natalie Diaz

      The Red and White Twins: The Story of a Foreign Parent With Complicated Twins in a Dutch NICU –

      Presentation: Flevoziekenhuis, Almere, 4 April, 2023 & LUMC, Leiden, December 18, 2023.

      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.

      stephanie ernst nicu rare disease twin patient experience
      Photo credit: Monique Oude Reimer
      Photo credit: Monique Oude Reimer

      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- ISTS Budapest 2021
      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.

      November 24th, 2021

      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 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.

      Here’s How We Can Work Together

      Stephanie Ernst Speaker Bio

      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.