Here’s my portfolio of published articles and work. If you’re interested in collaborating, please get in touch with me.
Columnist
Writer of the “TAPS Talks” column in the Dutch Meerlingen magazine each quarter.
Published Articles
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
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
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.