Privacy Policy

1. Who We Are

Our website address is: https://www.cmtausa.org/

The Charcot-Marie-Tooth Association (“CMTA”, “we”, “our”, “us”) is committed to protecting your privacy. This policy explains how we collect, use, and safeguard your information when you visit our website.

2. Information We Collect and How We Use It

We collect personal data to provide and improve our services, including:

• Comments: When visitors leave comments, we collect the data shown in the form, the visitor’s IP address, and browser user agent string for spam detection. 
• User Accounts: For registered users, we store information in your profile. You may view, edit, or delete your data at any time (except your username).
• Donations: We will not sell, trade, or share a donor’s personal information, nor send mailings on behalf of other organizations unless given explicit permission.
• eNews Alerts: Subscribing requires your name and email. You may unsubscribe anytime via the email footer or by contacting us at info@cmtausa.org.
• Surveys & Contests: Participation is voluntary. We may request contact and demographic info to notify winners and improve user experience.
• Special Offers: Occasionally, we send members information about products, services, or our magazine. You may opt out by contacting info@cmtausa.org.
• Site Updates & Service Notices: Members may receive important service emails that cannot be unsubscribed from.

3. Cookies

We use cookies to enhance user experience:

• If you leave a comment, cookies may save your name, email, and website for convenience.
• Login cookies last for 2 days (or 2 weeks if “Remember Me” is selected).
• Screen preference cookies last for 1 year.
• A temporary cookie checks browser compatibility at the login page.
• Post-editing sets a non-personal cookie indicating the post ID.

You can disable cookies via your browser settings, but some site features may not function properly.

4. Embedded Content and External Links

Articles on this site may include embedded content (e.g., videos, images). These behave as if you visited the source site and may collect your data, use cookies, and track your interaction.

We are not responsible for the privacy practices of external sites. Please read their privacy policies.

5. Analytics & Log Data

We collect IP addresses and use third-party cookies for analytics purposes (e.g., usage trends, demographic insights). IP addresses are not linked to personally identifiable information.

6. Data Sharing and Processing

• We do not sell your personal data.
• If you request a password reset, your IP address will be included in the email.
• We may occasionally supplement collected data with third-party information to improve our services.
• We implement appropriate technical and organizational measures to protect your personal data against unauthorized access, loss, misuse, or alteration. However, no method of transmission over the internet or method of electronic storage is 100% secure.
• We use trusted third-party service providers to help us operate our website and services. These parties are contractually obligated to protect your data.

Legal Bases for Processing: We collect and process your personal data based on your consent, to perform contracts, comply with legal obligations, or pursue our legitimate interests, such as improving our services or communicating with supporters.

7. Data Retention

• Comments and their metadata are retained indefinitely.
• Registered user profiles are retained until you delete or request removal.
• Analytics and log data may be kept in aggregate form for site improvement.
• We retain data as long as necessary to fulfill purposes outlined here or to comply with legal obligations.

8. Your Rights Over Your Data

You may request:

• An export of your personal data.
• Deletion of your personal data (except where retention is required for legal or security purposes).
• Correction or updates to your information by emailing info@cmtausa.org.

9. Where Your Data Is Sent

Visitor comments may be scanned by automated spam detection services.

10. Children’s Privacy

Our services are not intended for children under 13, and we do not knowingly collect data from children under 13. If we learn that we have collected personal information from a child under 13, we will delete it promptly.

11. Do Not Track Signals

Our website does not currently respond to browser “Do Not Track” signals. To control data tracking, you can manage your cookie preferences through your browser settings.

12. International Users

Our website is operated from the United States. If you access our site from outside the U.S., you consent to the transfer, storage, and processing of your information in the U.S.

13. How We Communicate Changes

We will post any policy changes on this page. If we use your personal data in a new way, we will notify you via email and allow you to opt out.

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

Opt-out Preferences