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Case Study

New England Metabolic Consortium

Creating a new normal in healthcare resources


How can we make rare metabolic disease resources more easily accessible to our audiences?


Boston Children's Hospital


UX Research

Problem Definition

Product Strategy

Service Design

MVP Development


Lead UX Designer (me)

2 UX Design Consultants

2 Metabolic Physicians

2 Nutritionists


Mar - Nov 2022 (9 mo)




The New England Consortium is a leading resource in the field of inborn errors of metabolism for physicians and families alike. Over time, it underwent a significant expansion in both scale and reach, serving as a pioneering platform that generated and consolidated unprecedented resources in the field of rare metabolic disease. Its invaluable support to healthcare professionals and families alike encompasses the entire spectrum of care, from Newborn Screening to Transitioning into Adult Care. However, this platform was visually outdated and difficult to navigate the 50+ pages making invaluable resources difficult to find and share.


I recognized the immense potential of the project for our target audience and took charge of advocating for its implementation. With my extensive background in Human Computer Interaction and creativity, as well as my in-depth knowledge and experience in genetics and metabolism gained from Boston Children's Hospital, I spearheaded a revamp of the Consortium's platform. The goal was to ensure an updated visual design and information architecture to help users find important resources with ease.


Before: too much text before entering source

Screen Shot 2023-12-10 at 6.47.26 PM.png

After: users quickly enter into a page with more intuitive navigation

Information architecture before and after




With the help of metabolic physicians, general physicians, and family members of those with inborn errors, we had 64% increase in web traffic, 10% increase in time spent on each page, and a 10% decrease in bounce rate.

"This is a fantastic looking website. It's easy to use and intuitive... You know what you have to do immediately in the moment for someone with a diagnoses."

Robert - General Physician

Computer Keyboard








The Challenge

While the website has received general positive feedback, some pages were still incredibly difficult for people to find. The large blocks explaining each resource hindered our audience from finding information. We had to ensure that our website was both friendly and informative while also not overstimulating and daunting.

Initial Website Design

The initial design before I began this project with is shown above. The platform had inconsistent styling, flow issues, and was extremely text heavy.

Images before re-design

Design Challenge

Why is this important?
(Quick background for non-metabolic professionals)

Not all hospitals have a metabolic department.


There are even less that are equipped for infants born with rare metabolic diseases and need immediate care after birth.


Through the initiative of amazing doctors like Dr. Levy at Boston Children's Hospital, the Acute Illness Protocols were created to help bridge this gap in information for general physicians and help infants in need.

They didn't stop there.


There is a gap in knowledge for school educators and even families from initial care, diet, and transitioning into adult care.


This website was created to be a friendly way for all audiences to take more initiative in their care and what we can all do for children with metabolic diseases.

Synthesis & Scoping

While conducting usability testing through observational studies and usability tasks, it became apparent: we could add features or consolidate and streamline the current platform.

I started by organizing the types of issues found based on usability testing by target audience.

NEC Needs
NEC Pain Points
Synthesis & Scoping

What Should We Focus On?

Of those pain points, we decided on working on the information architecture and conventionality of the website. Why? There were incredible resources that could be used, but given its placement or the website interface itself - they were lost gems and not receiving the traffic they otherwise could. This was especially apparent for the family usability testing. Working on the overall interface also allows for a more positive experience throughout both the professional and family portions of the website making it a more valuable starting point.

Let's Get Started

Initial Information Architecture


We started this by analyzing the current web flow and really understanding what resources were available where. We found that some links were broken, redundant, nestled after 4-5 clicks, and not easily found from initial navigation. With this understanding, we went back to the drawing board and really questioned what would be the best way for our audience to navigate based on their intended reasons for visiting guided by past usability tasks.

Infomation Architecture

Initial information architecture up to 5 clicks deep

Re-Designed Information Architecture

During user testing, it became apparent that our audience would first look for a way to reach the certain disease by its name, then based on the category the information may be in afterward. With this in mind, I changed the navigation to showcase by disease type first then by the category of the resource.

Reconfigured information architecture

Usability Testing and Personas

Focus groups were conducted on 7 people who fell into one of the following three categories. Feedback was given by 4 metabolic physicians, 2 general physicians, and a family member of an individual with a rare genetic disease.

Usability Testing
Patient Persona.png
General Physician Persona.png
Metabolic Professional Persona.png

Patient/ Family

Someone who wishes to learn more about their disease or the disease of a family member through additional resources including long term care and educational resources.

The General Physician

someone who relies on this website for up to date metabolic protocols to use in their own clinics as many hospitals do not have a metabolic or genetics department though immediate aid many be needed for these patients.

The Metabolic Medical Professional someone who relies on this site for up to date information on the New England Consortium and new information and resources for their own patients and hospitals.

Iterated Design

Usability tests revealed a number of problems with the website's navigation and interface. We found all users wanted less words per page, a dedicated section for outside resources. General physicians wanted quick access to critical information that may be used in a clinical setting. I focused on creating these changes.  

I created boxes with the title which when hovered over would showcase a description of the resource previously written making the initial page less text heavy. We chose to add a shorter survey asking for feedback from people and more visuals.

Iterated Design

First design iteration with more imagery

Refined Iterated Design

Usability testing showcased, while the previous hover boxes helped cut down on initial wordiness, it still didn't seem to be quite enough. In order to ensure that future designers on the website were able to keep coherency and create a website that could be more easily added onto in the future, we decided a sleeker, button approach would suffice. The design also includes more white space for maximum clarity.


Second design iteration with even less text

Final Design Additions

After peer feedback and analyzing what pages our audience most fequents through our analytics, we decided to add a section specific to the Acute Illness Protocols resulting in a quicker search for  medical professionals.

Final iteration with acute illness protocol pages


The platform has continued to create a positive impact from aiding families in understanding their children's diseases to helping general physicians understand their patient's conditions. Based on our 64% increase in web traffic, 10% increase in time spent on each page, 10% decrease in bounce rate, and anecdotes from general physicians and parent's of children with metabolic diseases, we believe our platform has become a more trusted and quickly navigable site for everyone.

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