Through design and data visualization, The Identity Builder creates connections at scale between rare disease patients who often feel isolated. It is a procedural art generator that turns data about 5500 rare diseases into unique visual identities for each of them.

Using the dataset from the RD MAP study (http://rdmap.nbscn.org/), published by the Zhejiang University research team Yang et al. in 2021, our algorithm dynamically translates 31,494 data points about rare diseases across 5 variables into a range of specific design elements that coalesce into a distinct, artistic data visualization for each of over 5500 rare diseases.

The Identity Builder is a free online data visualization tool available for every rare disease patient who wants to 1) view the official data symbol for their disease, 2) have an art piece filled with helpful scientific information about their disease, and 3) explore connections between their disease and hundreds of others. For aspiring patient advocacy groups that lack resources, the Identity Builder allows them to download for free, a brand book customized to their disease.

There are more than 20 million rare disease patients in China, with 200,000 new patients diagnosed yearly. Despite these numbers, a rare disease patient still feels alone, especially in China, where decades of the one-child policy left unintended consequences. For the Chinese, having a rare disease can be a sign that you are defective and a source of shame for patients and families. It’s the curse of being rare.

The result is that these diseases are not seen as legitimate and established diseases, and patients end up not having community support to overcome the stigma.

Working with Zhejiang University, we decided to change that. Based on their RDMAP statistical database, we created a procedural art generator that turns scientific data about 5,500 rare diseases into unique visual identities for each. Now, patients who once felt ashamed, invisible, and illegitimate, can finally have a unique symbol to help them feel seen and to empower them with new and helpful scientific knowledge about their disease.

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.

We translated the Rare Disease Map study (http://rdmap.nbscn.org/) into 5 relevant data variables. Then, we built our prototype procedural art generator that processes these 5 variables across 5,500 constants. Next, we created a design system around these variables, which we incorporated into a digital tool, UX, and accompanying UI. The final element was to develop a “connections” feature that allows users to match their disease and explore similarities between their condition and others.

We launched the Identity Builder in China on Rare Disease Day, amplifying our reach across disease groups through the 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, rare disease patients who feel 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