Privacy Policy

Last Updated: April 14, 2026

This Privacy Policy describes Our policies and procedures on the collection, use, and disclosure of Your information when You use the Service and tells You about Your privacy rights and how the law protects You.

We use Your Personal data to provide and improve the Service and to further our mission of finding a treatment for Mevalonate Kinase Deficiency (MKD). By using the Service, You agree to the collection and use of information in accordance with this Privacy Policy.

1. Interpretation and Definitions
  • Company (referred to as either “the Company”, “We”, “Us” or “Our” in this Agreement) refers to Cure MKD, 5766 Ayala Avenue, Oakland, California 94609.
  • Service refers to the Website (curemkd.org).
  • Personal Data is any information that relates to an identified or identifiable individual.
  • Usage Data refers to data collected automatically, either generated by the use of the Service or from the Service infrastructure itself (for example, the duration of a page visit).
2. Collecting and Using Your Personal Data

Types of Data Collected

Personal Data: While using Our Service, We may ask You to provide Us with certain personally identifiable information that can be used to contact or identify You. This includes:

  • Email address
  • First name and last name
  • Geographic location (State/Country)
  • Relation to MKD (Patient, Parent, Researcher, or Clinician)

Mevalonate Kinase Deficiency (MKD) Research Interest Data: Because our mission is to accelerate a cure for MKD, we may collect information regarding your interest in a future patient registry or clinical trials. This data is provided voluntarily by You and is used to identify the patient population and notify you of research opportunities. We do not sell your health interest data to third parties.

Usage Data: Usage Data is collected automatically when using the Service and may include Your Device’s IP address, browser type, and the pages of our Service that You visit.

3. Use of Your Personal Data

The Company may use Personal Data for the following purposes:

  • To provide and maintain our Service: Including to monitor the usage of our Service.
  • To contact You: By email or other electronic communication regarding updates or informative communications related to MKD research, trials, or foundation news.
  • To manage Your requests: To attend and manage Your requests to Us.
  • For Research Coordination: To help quantify the MKD patient population for the purpose of attracting clinical researchers and pharmaceutical interest.
4. European Data Protection Rights (GDPR)

If you are located in the European Economic Area (EEA), the United Kingdom, or Switzerland, you have certain rights under the General Data Protection Regulation (GDPR).

  • Lawful Basis: We process your data based on your Consent (when you sign up for updates) and our Legitimate Interest (advancing research for a rare disease).
  • Your Rights: You have the right to access, update, or delete the information we have on you. You have the right of rectification, the right to object, and the right to data portability.
  • Data Transfers: Your information is processed in the United States. We ensure that your data is handled with the highest level of security and in accordance with this policy.
  • Withdrawal of Consent: You may withdraw your consent at any time by contacting us at the address provided below.
5. California Privacy Rights (CCPA/CPRA)

As a California-based organization, we comply with the California Consumer Privacy Act.

  • Right to Know: You have the right to request that we disclose what personal information we collect, use, and disclose.
  • Right to Delete: You have the right to request the deletion of your personal information.
  • No Sale of Data: Cure MKD does not sell, rent, or lease your personal information to third parties.
6. Children’s Privacy

Our Service frequently deals with information regarding Mevalonate Kinase Deficiency, which affects children. However, we do not knowingly collect personally identifiable information from children under the age of 13 directly. If you are a parent or guardian and you are aware that your child has provided us with Personal Data, please contact us so that we may remove that information or ensure it is correctly managed under parental consent.

7. Security of Your Personal Data

The security of Your Personal Data is important to Us, but remember that no method of transmission over the Internet, or method of electronic storage is 100% secure. While We strive to use commercially acceptable means to protect Your Personal Data, We cannot guarantee its absolute security.

8. Changes to this Privacy Policy

We may update Our Privacy Policy from time to time. We will notify You of any changes by posting the new Privacy Policy on this page and updating the “Last Updated” date at the top of this Privacy Policy.

9. Contact Us

If you have any questions about this Privacy Policy, You can contact us:

  • By email: contact@curemkd.org
  • By mail: 5766 Ayala Avenue, Oakland, California 94609
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