Last updated: June 15, 2025
Last checked: June 15, 2025
Applies to citizens and legal permanent residents of the United States.
1. Introduction
Our website, https://www.cmtausa.org/ (hereinafter: “the website”) uses cookies and related technologies (collectively “cookies”). Some cookies are placed by third parties we have engaged. This page explains your rights regarding personal information sales, sharing, and sensitive data usage, as well as your cookie preferences.
We do not sell or share personal information to third parties for monetary consideration; however, under certain state laws (e.g., CPRA, CPA, CCPA, CTDPA, etc.), some disclosures might be considered a “sale” or “sharing.” You can request exclusion or limits on the use or disclosure of your personal information by filling out the form below.
2. Your Opt-Out Preferences and Rights
To submit a request regarding your data, please provide the following:
- Name
- Email Address
And select the options that apply to your preferences:
- Global opt-out from selling and sharing my personal information and limiting the use or disclosure of sensitive personal information.
- Do not sell my personal information for cross-context behavioral advertising.
- Limit the use of my sensitive personal information.
- Request for access to my personal data.
- Right to be forgotten (deletion request).
- Right to data portability (receive your data in a portable format).
3. Verification of Your Identity
To protect your privacy and prevent unauthorized data access, we require verification of your identity before processing requests. After submitting this form, you may be contacted to provide additional information or documents to confirm your identity. Verification may include providing a copy of a government-issued ID, utility bill, or other documentation.
4. Confirmation of Your Request
Once we receive and verify your request, we will send a confirmation email acknowledging receipt. We aim to respond within 45 calendar days as required by applicable law. If more time is needed, we will notify you.
5. Accessibility
We are committed to making our website and services accessible to all users, including those with disabilities. If you need assistance submitting your preferences or have accessibility-related questions, please contact us at info@cmtausa.org.
6. Cookies and Consent Management
This page works in conjunction with the cookie banner you see when visiting our site. Your preferences here will sync with those cookie settings to ensure consistent choices regarding cookie usage.Your selections here will synchronize with your cookie consent choices to provide consistent experience across visits and devices.
7. Data Security and Privacy
The personal data you provide on this form will be handled securely using appropriate technical and organizational measures to prevent unauthorized access, loss, or misuse. For details on how we protect your information, please see our Privacy Policy.
8. How to Enable, Disable, or Delete Cookies
You can manage cookies via your browser settings to delete or block cookies. Please note that disabling cookies may affect the functionality of our website.
9. Your Rights Regarding Personal Data
You have rights to:
- Access the data we process about you.
- Request correction or deletion of inaccurate or outdated data.
- Object to certain types of processing.
- Request limitation of data processing.
- Receive your data in a portable format.
To exercise these rights, use the form above or contact us at info@cmtausa.org.
10. Regular Updates
We regularly review and update this page to ensure ongoing compliance with applicable privacy laws and best practices. Changes will be posted here with updated timestamps.
Contact Us
If you have questions or requests regarding this privacy policy, contact us at:
Email:
info@cmtausa.org
Address:
Charcot-Marie-Tooth Association
PO Box 105
Glenolden, PA 19036
To manage your cookie preferences or opt out of data sales/sharing, please visit our Privacy Policy page.
