Now, every rare disease can have its own visual identity.

Generate a symbol below.

Each rare disease symbol is more than just a unique visual identity. Each is full of meaning, as the design elements reflect the distinctive characteristics of the rare disease.

Genotype

We start with the genotype, or the genetic make-up of the rare disease. The point where the corner of the line touches the grid represents the genotype group.In this case, the group is #.

Phenotype

Next is the phenotype of the disease, or how it affects the body.
The point where the corner of the solid shape touches the grid represents the phenotype group. In this case, the group is #.

System(s) affected

Here 23 handmade textures symbolize which different systems of the body are affected. For instance, the circulatory system, lymphatic system, cardiovascular system etc.

Prevalence

The color the logo takes represents the prevalence of the rare disease. The warmer the color, the greater the number of people who are affected.

Chromosomes

Finally, in the case of a genetic disease, we use gold Xs to represent the number of chromosomes that are affected.

This is the unique visual identity for .

Only a few thousand people have this rare disease.

Now they have something else in common–a symbol of their own.

The Identity Builder Privacy Notice

Effective Date: March 16, 2024

The Identity Builder respects your concerns about privacy. This Privacy Notice describes the types of information we collect about individuals on https://www.theidentitybuilder.com/ (the “Site”), how we use the information, with whom we share it, and the choices available regarding our use of the information. The Privacy Notice also describes the measures we take to safeguard personal information, how long we retain it, and how individuals can contact us about our privacy practices and to exercise their rights.

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Information We Obtain

Information You Provide

We collect and store personal information (such as name and other contact details) that you choose to provide to us through the Site or when you contact us. “Personal Information” is information that identifies you as an individual or relates to an identifiable individual. The types of personal information we collect includes:

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Information We Receive About You from Other Sources

We receive your Personal Information from other sources, such as publicly available databases and providers of demographic information.

Automated Collection of Information

When you use the Site, we obtain certain information by automated means, such as browser cookies, beacons, device identifiers, server logs, and other technologies.

The information we obtain in this manner may include your:

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  • Dates and times of access to the Site, and
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You can view more information on how we obtain certain information by automated means in our Cookie Notice, incorporated into this Privacy Notice by this reference.

Third-Party Web Analytics Services

We use third-party online analytics services, such as Google Analytics. The service providers that administer these analytics services use cookies and similar technologies to collect and analyze information about use of the Site and report on activities and trends and diagnose technical issues. To learn more about Google’s practices, please visit www.google.com/policies/privacy/partners/, and opt out of them by downloading the Google Analytics opt-out browser add-on, available at https://tools.google.com/dlpage/gaoptout.

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We use the Personal Information we obtain on the Site for legitimate business purposes, including to:

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  • Comply with and enforce applicable legal requirements, relevant industry standards, and our policies, including this Privacy Notice and/or The Identity Builder’s Terms and Conditions or Terms of Use. We will engage in these activities to comply with a legal obligation and/or because we have a legitimate interest.
  • Aggregate and/or anonymize Personal Information so that it will no longer be considered personal information. We do so to generate other data for our use, which we may use and disclose for any purpose.
Personal Information Sharing

We share your Personal Information with:

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We also disclose information about you (1) if we are required to do so by law or legal process (such as a court order or subpoena), including laws outside your country of residence; (2) in response to requests by, or cooperate with, government agencies, such as law enforcement authorities, including outside of your country of residence; (3) to establish, exercise, or defend our legal rights; (4) when we believe disclosure is necessary or appropriate to protect our rights, privacy, safety, or property and/or that of our affiliates, you, or others; (5) in connection with an investigation of suspected or actual illegal activity; (6) in connection with the sale or transfer of all or a portion of our business, assets, or stock (including in the event of a reorganization, dissolution, or liquidation); or (7) otherwise with your consent.

Cross-Border Transfer

Your personal information may be processed and stored in any country where we have facilities or in which we engage service providers, and, by using the Site, you understand your information may be transferred to countries outside of your country of residence, including the United States, which may have data protection rules that are different from those of your country. In certain circumstances, courts, law enforcement agencies, regulatory agencies, or security authorities in those other countries may be entitled to access your personal information.

ADDITIONAL INFORMATION REGARDING THE EUROPEAN ECONOMIC AREA (“EEA”): Some non-EEA countries are recognized by the European Commission as providing an adequate level of data protection according to EEA standards (the full list of these countries is available here. For transfers from the EEA to countries not considered adequate by the European Commission, we have put in place adequate measures, such as standard contractual clauses adopted by the European Commission to protect your personal information. You may obtain a copy of the EU’s Standard Contractual Clauses here.

Your Rights and Choices

We offer you certain choices in connection with the personal information we obtain about you. If you would like to request to review, correct, update, suppress, restrict, or delete personal information, to object to the processing of personal information, or to receive an electronic copy of your personal information for purposes of transmitting it to another company (to the extent these rights are provided to you by applicable law), please contact us as specified in the How to Contact Us section of this Privacy Notice. We will respond to your request consistent with applicable law.

To help protect your privacy and maintain security, we take steps to verify your identity before granting you access to your information. To the extent permitted by applicable law, a charge may apply before we provide you with a copy of any of your personal information that we maintain.

You can unsubscribe from our marketing mailing lists by following the “Unsubscribe” link in our marketing emails. If you would like to unsubscribe from any other type of marketing you receive from us, please contact us as specified in the How to Contact Us section of this Privacy Notice.

Other Online Services and Third-Party Features

The Site may provide links to other online services and websites for your convenience and information, and may include third-party features such as apps, tools, widgets, and plug-ins (e.g., LinkedIn, Instagram, Facebook, and Twitter buttons). These services and websites may operate independently from us. The privacy practices of these third parties, including details on the information they collect about you, are subject to their own privacy statements. To the extent any linked online services or third-party features are not owned or controlled by us, The Identity Builder is not responsible for these third parties’ information or other practices.

Retention of Personal Information

We retain personal information for as long as needed or permitted in light of the purposes for which we obtained it and consistent with applicable law. The criteria used to determine our retention periods include:

  • The length of time we have an ongoing relationship with you and provide the Site or our services to you;
  • Whether there is a legal obligation to which we are subject; and
  • Whether retention is advisable in light of our legal position (such as in regard to applicable statutes of limitation, litigation, or regulatory investigations).
How We Protect Personal Information

We seek to use reasonable administrative, technical and physical safeguards designed to protect personal information within our organization. We hold our employees accountable for complying with policies, procedures, and regulations regarding the protection and confidentiality of personal information. If you have reason to believe that your interaction with us is no longer secure, please immediately notify us in accordance with the How to Contact Us section of this Privacy Notice.

Transfer of Information to New Legal Entities

We reserve the right to transfer your personal information in the event The Identity Builder or part of it is acquired by, sold to, or merged with another legal entity. This includes, but is not limited to, any corporate reorganization, restructuring, or any other change in corporate control. In such circumstances, we will ensure your information is transferred in a secure manner and the new entity agrees to protect your information in a manner consistent with the obligations set forth in Privacy Notice.

Children’s Personal Information

The Site is designed for a general audience and is not directed to children under the age of 16. The Identity Builder does not knowingly collect or solicit personal information from children under the age of 16 through the Site. If you believe that a child under the age of 16 may have provided us with personal information through the Site, please contact us as specified in the How to Contact Us section of this Privacy Notice.

Updates to Our Privacy Notice

This Privacy Notice will be updated periodically and without prior notice to you to reflect changes in our personal information practices. We will indicate at the top of the notice when it was most recently updated. Any changes will become effective when we post the revised Privacy Notice on the Site.

How to Contact Us

If you wish to exercise any of your privacy rights, or if you wish to contact us in relation to this Privacy Notice or any privacy matter, including our use of your personal information, please use the following contact details:

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The Identity Builder Cookie Notice

Effective Date: March 16, 2024

This Cookie Notice describes the different types of cookies and similar technologies used on The Identity Builder website from which you are accessing this policy (the “Site”). This policy provides you with information about how we use cookies and how you can control them.

We can change this Cookie Notice at any time. The “Effective Date” at the top of this page indicates when this policy was last revised. Any changes will become effective when we make the revised Cookie Notice available on the Site.

1. What are cookies and similar technologies?

Cookies are a standard feature of websites that allow us to store small amounts of data on your computer about your visit to the Site. We use cookies to perform many different functions. For example, cookies:

  • Help us learn which areas of the Site are useful and which areas need improvement;
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  • Help us to serve online advertising to you that is relevant to your interests; and
  • Measure the effectiveness of our online advertising and marketing communications.

We also use technologies similar to cookies, such as Flash Local Shared Objects (also known as Flash cookies) and pixel tags (also known as web beacons and clear GIFs), for similar purposes.

2. What types of cookies do we use?

Below we list the different types of cookies and similar technologies used on the Site.

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You can manage your cookie preferences at any time via our Cookie Preference Center.

Additionally, you can stop certain types of cookies from being downloaded on your computer by selecting the appropriate settings on your web browser. Most web browsers will tell you how to stop accepting new browser cookies, how to be notified when you receive a new browser cookie, and how to disable existing cookies. You can find out how to do this for your particular browser by clicking “help” on your browser’s menu or by visiting http://www.allaboutcookies.org. If you choose to delete or disable cookies and similar technologies, your experience on the Site may be diminished, and some features may not work as intended.

If you have any questions, please contact us here:

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Every rare disease deserves an identity of their own.

The Identity Builder is a procedural art generator that turns proprietary data about rare diseases into unique visual identities.

Unlike common diseases, only 50% of rare diseases have a support or network group, leading to many patients feeling misunderstood, overlooked, or unseen. They need a unifying identity: a communal flag to stand under that symbolizes their unique disease.

Each rare disease logo the Identity Builder generates is open-source and free to any patient or advocacy group. It’s a new identity that can bring patients–even in a world of isolation–a sense of connection, community, and recognition.

Patients can use their logo on everything from t-shirts and bags to their social media profile. Advocacy groups can use it as their brand icon at conferences, for social media and educational content, merchandising, fundraising or wherever they wish to raise awareness.

Identity Builder is powered by the rare disease data mapping research at ZheJiang Medical University in China.

“One small symbol can be huge for someone who feels so alone.” Dr Li, Zhejiang University

Download the Visual Identity

For You

download symbol

For an Organization

generating your resources
Download Brand Book

Share the symbol to raise awareness of the rare disease. This can also encourage others with rare diseases to create their own symbols and build connections.

Genotype

The genetic make-up of the rare disease.

Phenotype

How the rare disease affects the body.

System(s) Affected

Body systems that are affected by the rare disease. For example, the circulatory system, lymphatic system etc.

Prevalence

How many people have the rare disease.

Chromosomes

The number of chromosomes affected by the rare disease.

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