Privacy Policy

Effective date: January 2026

Voices for Duchenne (“we,” “us,” or “our”) is a United States–based organization committed to protecting your privacy and handling your personal information with care, transparency, and respect. This Privacy Policy explains how we collect, use, store, and protect personal data when you visit our website or engage with our work.

 

1. Information We Collect

We may collect the following types of information:

Personal information you voluntarily provide, such as your name, email address, country, or organization when you:

  • Sign up for newsletters or updates
  • Contact us through forms or email
  • Participate in campaigns, surveys, or events

Non-personal information collected automatically when you use our website, such as:

  • Browser type and version
  • Device type
  • Pages visited and time spent on the site
  • General geographic location (e.g., country or region)

We do not knowingly collect personal data from children without appropriate consent.

 

2. How We Use Your Information

We use the information we collect to:

  • Communicate with you and respond to inquiries
  • Share updates, news, and advocacy information related to Duchenne and rare diseases
  • Improve our website, content, and outreach efforts
  • Support our advocacy, research, and awareness activities
  • Comply with legal or regulatory obligations

We do not sell, rent, or trade your personal information.

 

3. Cookies and Analytics

Our website may use cookies or similar technologies to enhance user experience and understand how our site is used. Cookies help us:

  • Analyze website traffic and performance
  • Understand which content is most useful to visitors
  • Improve site functionality

You can control or disable cookies through your browser settings. Disabling cookies may affect some features of the website.

 

4. Sharing of Information

We may share limited information only in the following circumstances:

  • With trusted service providers who support website operations, communications, or analytics, and who are required to protect your data
  • When required by law, regulation, or legal process
  • To protect the rights, safety, or integrity of Voices for Duchenne or others

We do not share personal information for commercial purposes.

 

5. Data Storage and Security

We take reasonable technical and organizational measures to protect personal information against loss, misuse, unauthorized access, disclosure, or alteration. However, no method of transmission over the internet or electronic storage is completely secure.

We retain personal data only for as long as necessary to fulfill the purposes outlined in this policy, unless a longer retention period is required by law.

 

6. Your Rights

If you are a resident of the United States, you may have rights under applicable federal and state privacy laws, including the California Consumer Privacy Act (CCPA), as amended by the California Privacy Rights Act (CPRA), where applicable. These rights may include the right to:

  • Request access to the personal information we collect about you
  • Request correction or deletion of your personal information
  • Opt out of certain data sharing practices, where applicable
  • Limit the use of sensitive personal information, if applicable

We do not sell personal information as defined under applicable U.S. privacy laws.

Individuals outside the United States may also have rights under their local data protection laws.

To exercise any applicable rights, please contact us using the details below.

 

7. Third-Party Links

Our website may contain links to external websites. We are not responsible for the privacy practices or content of third-party sites. We encourage you to review their privacy policies before providing personal information.

 

8. Changes to This Policy

We may update this Privacy Policy from time to time to reflect changes in our practices or legal requirements. Any updates will be posted on this page with a revised effective date.

 

9. Contact Us

If you have questions about this Privacy Policy or how we handle personal data, please contact us at:

Voices for Duchenne
Email: voices4duchenne@gmail.com