December 3, 2020

Professional Writer at Work: Interview with Joanne Zeis, Senior Editor at Raremark

Joanne Zeis is Senior Editor at Raremark, an information-sharing platform for people diagnosed with rare illnesses. Joanne’s medical writing career began with a few years of contract writing jobs and the publication of her own medical books targeted for patients. Focused on providing information in plain language for patients and health consumers, Joanne’s current role involves communicating or "translating" complex medical concepts for lay audiences in clear and accurate ways. 


Q:   Describe your current role and your daily professional tasks and responsibilities.  

A:   As Raremark's Senior Editor, I'm responsible for editing (and occasionally writing) our patient-facing materials. These materials range from educational articles about rare conditions, to surveys, infographics, reports, micro-wording and static copy for web pages, fill-in-the-blanks questions, and patient-related materials for IRB approval. Every day is different, which is great!

Raremark is a start-up based in London. We focus on helping rare disease patients and caregivers through a combination of online communities, connections with pharmaceutical researchers, and a healthy dose of behavioral-science concepts. All employees and consultants work remotely from the UK, US, Belgium, Ukraine, and Bangladesh. I'm in the Boston area.

Q:   What made you realize that writing was something you wanted to pursue professionally?

A:   I've always loved to write and I’ve always loved reading about medical topics. Unfortunately, I also had 20 years of weird medical issues that doctors dismissed. By the time I was diagnosed with a rare disease at the age of 40, I knew personally how helpful plain-language explanations of medical information could be.

I started writing in my spare time about my condition because there was almost nothing available that patients could understand about this disease without a medical degree. First, I self-published a book of interviews that I'd done with 15 people who have my condition. My second self-published book had plain-language information about this condition that was based on medical research articles and clinical trial results. Because of these books and my advocacy work for patients, one of my doctors nominated me for an award from the American Medical Association; I received it in 2006. In 2015, my third book had an official publisher (finally!) and won a National Health Information Merit Award for Patient Education.

I was able to turn my book-writing and good reviews into a full-time job as health writer at a behavioral-science research company. Five years later, I was promoted to senior health writer, and I also enrolled in a one-year patient advocacy certificate program.

In my current role at Raremark, I finally have my dream job: I'm able to focus on the plain-language health writing that's so important  to our rare disease readers, while using my personal experience as a rare disease patient to inform my work.

Q:   What advice would you give to a professional writer interested in a career like yours?

A:  If you're going to work on patient-facing materials, then you need to think of the patient before you start writing. For example: How will this procedure (or test or diagnosis) affect that person's daily life? What will this piece of information mean to the patient?  It's not always enough to list facts. Put yourself in your reader's shoes and consider what extra questions you'd ask in their situation. Then find the answers to those questions and include them in your piece.

It's not easy to be a plain-language health writer, because it's not a traditional role in medical-writing circles. One of the best experiences for me was a 2-day workshop on "Plain Language for Health" (PL4H) that I attended in Boston. It provided great tips on plain-language writing and the translation of "medspeak" into everyday words. Becoming a member of the American Medical Writers Association (AMWA) is also very helpful. They're adding more plain-language topics every year to their annual conference.

Q:   What do you look for in assessing potential new hires?

A:   The best plain-language health writers/editors usually have an interesting backstory and a passion for their work. I like to know why this job is important and meaningful for the people who apply. How well do they understand the patient's point of view? Are they able to show compassion for others?

It’s also important to be able to collaborate and get along with others. For example, Raremark works with people in multiple time zones and with different English-language abilities. You need to be both flexible and able to manage remote projects with multiple team members.  

Also, be prepared to take a writing test. It's one thing to share your portfolio; it's another to write in a way that fits the specific job and style of the organization that you want to join.


Thank you to Joanne Zeis  for sharing her professional writing journey with us. 

To learn more about the MS in Professional Writing program at NYU School of Professional Studies, visit

Related Articles