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.
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.
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.
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.
See And Hear Me
Interested in what I have to say? Here are some of my appearances and interviews with different groups and people.
The Red and White Twins: The Story of a Foreign Parent With Complicated Twins in a Dutch NICU –
Presentation: Flevoziekenhuis, Almere, 4 April, 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.
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.
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.
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.
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.
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.