There are thousands of rare diseases, many so rare many patients are bound never to meet someone else with their condition. Unlike common conditions, 50% of rare diseases don’t have a support network or advocacy group. So, in addition to being sick, rare disease patients often feel alone and know nothing about their condition. On top of that, people with rare diseases that have no treatment find themselves having to be medical detectives, researching online and traveling to conferences to find clues and connections between their disease and others which do have a treatment.

With the Identity Builder, the goal of Zhejiang University was to 1) promote their advanced data science being conducted at their medical school, to differentiate themselves from other competing universities and 2) launch a tool that expresses the core tenet of their scientific research, that they have discovered myriad statistical connections among thousands of rare

The Identity Builder is a procedural art generator that turns proprietary data about rare diseases into visual identities that allow patients with rare diseases to be seen and find connections between their disease and many others.

Each logo generated serves as a visualization and mnemonic device of important scientific information about the disease, that empowers patients and families who are still desperately searching for a treatment.

But beyond dynamically creating visual identities, this data-driven tool helps foster a deeper understanding of rare diseases among the general public and helps rare disease patients build communities with others who are undergoing a similar experience.

The RD MAP study, published on the Orphanet Journal of Rare Diseases by Jian Yang, Cong Dong, Huilong Duan, Qiang Shu, and Haomin Li in 2021 (https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01741-4), included 3,287 rare diseases in a phenotype-based map and 3,789 rare genetic diseases in a gene-based map. Using this dataset, the Identity Builder translates 31,494 data points about 5500 rare diseases across 5 into visual elements like shape, orientation, color, texture, and composition, generating 28 trillion combinations.

Each data variable corresponds to a visual element in the design, and changing the variable changes the shape, location, pattern or color of the design element.

Based on the RDMAP study published by Yang et al. in 2021, we took 10 months to create a procedural art generator that turns scientific data about 5,500 rare diseases into unique visual identities for each.

May 2023:

Translation of the RD MAP database into 5 relevant data variables.

August 2023:

Building our prototype of a procedural art generator that processes these 5 variables across 5500 constants.

October 2023:

Creating a design system around the 5 major variables, which we incorporated it into a digital tool, UX, and accompanying UI.

December 2023:

Developing a “connections” feature that allows users to match their disease and explore similarities between their condition and others.

February 2024:

We launched the Identity Builder in China on Rare Disease Day, amplifying our reach across disease groups through Chinese Association of Rare Diseases (CHARD) and using the research network of Zhejiang University to reach all medical schools in China in a live conference in Shanghai

Now, thanks to the Identity Builder, rare disease patients that felt invisible have a unique symbol to help them be seen and a powerful data visualization tool to help them find a cure.

Rare disease patients who had never seen or met someone else with a similar condition have started to create connections using the Identity Builder.

Of the rare disease organizations that received the Identity Builder through CHARD, 80% of them promoted the project to their constituents, resulting in over 300,000 individual searches and over 50k downloads in one month after Rare Disease Day.

Social posts on WeChat about the campaign were 100% of positive sentiment.

An attitudinal study among researchers and medical students fielded after the campaign launched ranked Zhejiang University as #2 in innovation among all medical schools in China, up from #5 YOY. The school ranked #1 in rare disease research, up from #2 YOY.

“I’ve never thought that other people with rare diseases like me had so many things in common.” Dong Chengcheng