The Friedreich's Ataxia App

Product Manager

User Researcher

Video Editor

Confluence

Figma

Invision

Jira

Maze

Raising awareness for Friedreich's Ataxia within their community and beyond

Friedreich's Ataxia, or FA, is a rare autosomal recessive genetic disease. There is little awareness outside of the existing community. Because of the rarity of the disease, it is difficult for FA community members to connect with one another. There is also no information center for community members to go to when they have questions or would like to better understand every step of the disease.

Our goal was to create an app that connects community members while also allowing individual FAers or their proxy’s to track their symptoms and apply for research opportunities around the world- all in a few clicks.

Example user flow for the FA App:

First we wanted to understand if there was a true need for FAers and the FA community to have an app where they could track symptoms and connect with others. After talking to adults & teenagers with FA, as well as their proxy parents, we found this need was true. Then we scoped out and wireframed an MVP version of the app with the functionalities users suggested during user testing.

See Focus Group Results here 📈

See Wireframe Validation Results here 📈

Example Wireframes

We wanted users to be comfortable sharing their symptom information, but not feel it was a main requirement to use the app. We including a “health vault” section that is for user’s only- track your symptoms, mental and physical health, as well as your doctor appointments. The community feature of the app was a great addition to connect with others in their area. The knowledge-base allows users to learn about trials, doctors in the area, or research about FA. The research study and survey section would be the only section used for data and further research. Researchers can contact EndFA to get an real-time data pool of information about FA by people who have it. HIPPA compliance was a main focus through the entirety of the project as samples of data could be used by doctors and researchers in future studies.