Portfolio

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

Published Articles

Rare Revolution Magazine

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

PatientWorthy

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

Twinfo

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

TAPS and Twins – Twinfo

Telling Newborn Identical Twins Apart – 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

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

‘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

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

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

Business Registration:

Stephanie Ernst operates under the business name of Ginger Ninja Consulting, registered with the Dutch Chamber of Commerce (Kamer van Koophandel) under number 71293353. Any invoices will be issued under this business entity. For an idea of rates, please click here.