Portfolio

Here’s my portfolio of published articles and work. If you’re interested in collaborating, please get in touch with me.

Looking for my speaker profile? Click here.

Muck Rack Profile

Columnist

Writer of the “TAPS Talks” column in the Dutch Meerlingen magazine each quarter.

Published Articles

AIMS Journal

Screening for twins: Why good guidelines matter – ISSN 2516-5852 (Online) AIMS Journal, 2024, Vol 36, No 1

Rare Revolution Magazine

Engaging Patients To Shape The Research Of The Future – Rare Revolution Website, 21 April 2023

The Role of Gender in Rare Disease: Are The Voices Of Mothers (and Women) Being Heard? – RARE and Equitable edition, Summer 2021

Seeing Red: The Importance of Twin Anemia Polycythemia Sequence Screening For Parents – Rare Revolution 26/11/2021

Turning The Tide For Rare Disease. – Rare Revolution Website, 28 February 2021

PatientWorthy

What Rare Disease Patients Want Doctors To Know – Patient Worthy

The Problem With A TAPS Diagnosis – PatientWorthy

Do Google It: The Benefits Of Patient Led Advocacy Groups – Patient Worthy

Creating Compassionate, Respected Online Rare Disease Communities: 7 Tips For Success – Patient Worthy

How Social Media Has Changed Rare Disease Advocacy – Patient Worthy

What is Twin Anemia Polycythemia Sequence? – PatientWorthy

A Look At The TAPS Trial – PatientWorthy

Broadening Perspectives And Changing Conventional Approaches – PatientWorthy

The Lessons I Learned From A Twin Anemia Polycythemia Sequence Diagnosis – Patientworthy

Beacon For Rare Diseases

Twin Anemia Polycythemia Sequence – A Rare Disease Affecting Twins – Beacon

Twinfo

Difficult Decisions: When Selective Reduction Is On The Table – Twinfo

TAPS and Twins – Twinfo

Telling Newborn Identical Twins Apart – Twinfo

Raising Bilingual Twins – Twinfo

Amsterdam Mamas

One Mother’s Story of Twin to Twin Transfusion Syndrome – Amsterdam Mamas

Changing the Narrative: Advocating For Your Kids – Amsterdam Mamas

Getting A Rare Disease Diagnosis In A New Country: Now What? – Amsterdam Mamas

Fetal Health Foundation

“TTTS vs TAPS: What’s The Difference Anyway?” Connexions Issue 6 – Spring 2020, pages 14-17 – Fetal Health Foundation.

Twin Anemia Polycythemia Sequence: The Slow Change That Alters Everything – Fetal Health Foundation

Twiniversity

What is TAPS? Learn About This Little Known Complication – Twiniversity

Others

TTS en TAPS: meerlingaandoeningen tijdens de zwangerschap – Nederlands Vereniging voor Ouders van Meerlingen (NVOM) – Co-athor with Yrma Atema.

The Trouble With Twins: Delivering Daughters With TTTS – YouShare Project

The Dutch are responsible for the cultivation of orange carrots’ – Interview by Dutch News NL

‘We have to deliver them quickly.’ They arrived tiny, one very pale and thin, the other red, puffy.’: Mom raises awareness about rare Twin Anemia Polycythemia Sequence. – Love What Matters

Complications of Twin Pregnancies – Japan Multiple Birth Association.
Scriptwriter and advisor. Credited as Assistant Producer

Academic Works

Ernst, S., Aultman, J., Fischbein, R., & Nicholas, L. (n.d.-a). What about the caregivers? The ethical considerations for TAPS screening and follow up care [E-poster]. Twins Congress 2023 ( the Joint 6th World Congress on Twin Pregnancy: The 18th Congress of the International Society for Twin Studies (ISTS) )  15-17 June 2023, Budapest, Hungary.

2022, A unique partnership in rare diseases: When a patient advocacy group connects with committed researchers. European Conference on Rare Diseases, 27 June – 1 July, Online/France. Stephanie Ernst & Joanne Verweij View the video poster here.

An Ethical Examination of Twin Anemia Polycythemia Sequence Screening,
J.M. Aultman, S. Ernst, R. Fischbein, L. Nicholas,
An ethical examination of twin anemia polycythemia sequence screening,
Volume 27, 2023, 100881, ISSN 2352-5525, https://doi.org/10.1016/j.jemep.2023.100881
.

Dispelling Myths about Antenatal TAPS: A Call for Action for Routine MCA-PSV Doppler Screening in the United States
Nicholas, L.; Fischbein, R.; Aultman, J.; Ernst-Milner, S. Dispelling Myths about Antenatal TAPS: A Call for Action for Routine MCA-PSV Doppler Screening in the United States. J. Clin. Med. 2019, 8, 977. https://doi.org/10.3390/jcm8070977

Review of International Clinical Guidelines Related to Prenatal Screening during Monochorionic Pregnancies.
Nicholas, L.; Fischbein, R.; Ernst-Milner, S.; Wani, R. Review of International Clinical Guidelines Related to Prenatal Screening during Monochorionic Pregnancies. J. Clin. Med. 2021, 10, 1128. https://doi.org/10.3390/jcm10051128

Patient-Reported Monochorionic-Diamniotic Twin Pregnancy Management and Experiences During the COVID-19 Pandemic: A Mixed-Methods Cross-Sectional Survey
Fischbein, Rebecca, et al. “Patient-Reported Monochorionic-Diamniotic Twin Pregnancy Management and Experiences During the COVID-19 Pandemic: A Mixed-Methods Cross-Sectional Survey.” Journal of Patient Experience, 2022, https://doi.org/10.1177/23743735221133634.

ORCID – https://orcid.org/0000-0002-9923-862X

Scopus Profile.

NORD – Twin Anemia Polycythemia Sequence

Other Media:

Building Connections: How Social Media Can Help Rare Disease Patients: The Times (Raconteur) – Interviewed by Magda Imbrahim. 25/11/2021

Redefining TAPS: How Stephanie And the TAPS Support Foundation Raise Awareness – Patient Worthy – Interviewed by Jessica Lynn, 18/06/2021

Stephanie’s tweeling bleek TAPS hadden – LINDA. magazine – Interviewed by Anna Neeltje de Boer, 12/12/2023

Visit My Blog

Business Registration:

Stephanie Ernst operates under the business name of Stephanie Ernst Consulting, registered with the Dutch Chamber of Commerce (Kamer van Koophandel) under number 71293353. Any invoices will be issued under this business entity. For pricing, get in touch.