The Identity Builder is a procedural art generator that turns proprietary data about 5500 rare diseases into unique visual identities. Now, thousands of conditions have a unique symbol to help them be seen by society and medical community, individuals have a data visualization containing vital information about each disease.

Using the dataset from RD MAP study, 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 specific design elements. The result is a distinct, artistic data visualization for each of over 5500 rare diseases.

The Identity Builder is an online tool that transforms scientific data into visual identities. It’s an unregulated service by nature. Developed in partnership with one of China’s leading universities, it has undergone relevant medical and scientific reviews within the academic setting.

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 its 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 that they can learn from to create connections with other rare disease patients.

No restrictions apply

The Identity Builder's main targets are rare disease patients, their families, advocacy groups, and the medical research community There are an estimated 263 to 446 million rare disease patients worldwide, with 20 million residing in China, where 200,000 people get diagnosed with rare disease every year.

There are thousands of rare diseases, many so rare that many patients are bound never to meet someone else with their condition. Unlike common conditions, 50% of rare diseases don’t have 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 translates 31,494 data points to create a well-balanced artwork 5500 times using the same grid. To help the scientific community decode the symbols, we were intentional in the art direction to give every grid element a meaning.

Each disease's phenotype group determines the identity's solid shape, while the genotype group controls the outline shape. The Xs representing the chromosomes affected have a gold foil texture due to the multifaceted significance of gold in Chinese culture, representing wealth, spirituality, tradition, and artistic expression.

Finally, 23 handmade textures are inspired in the ancient Chinese textiles and artistically reinterpreted to resemble the body system the disease affects.

The result is not only a piece of art but also a single source of underlying data and a mnemonic device that introduces patients and doctors to the science of 5,500 rare diseases. And counting.