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.

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 that 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 diseases.

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.

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.