Tethered Cord Support Alliance (TCSA)
Privacy Policy
The Tethered Cord Support Alliance (“TCSA,” “we,” “our,” or “us”) is committed to protecting the
privacy and confidentiality of the individuals we serve. This Privacy Policy explains how we
collect, use, store, and protect personal information obtained through our website, events,
programs, webinars, conferences, donations, mailing lists, and other activities.
By interacting with TCSA, you consent to the practices described in this policy.
1. Information We Collect
Personal Information
- Name
- Email address
- Mailing address
- Phone number
- Organization or professional affiliation
- Donation or payment information
- Event registration information
- Volunteer applications or participation details
Health-Related or Sensitive Information
- Medical experiences
- Diagnostic information
- Symptom history
- Surgical or treatment experiences
- Family or caregiving information
TCSA only collects health-related information when voluntarily provided.
2. How We Use Information
- Provide educational resources and support services
- Register participants for events
- Send newsletters and updates
- Process donations
- Improve programs and outreach
3. Confidentiality and Protection of Information
TCSA takes reasonable measures to protect personal information.
4. Sharing of Information
TCSA does not sell, rent, or trade personal information.
5. Use of Photos, Testimonials, and Recorded Content
TCSA may record webinars, conferences, interviews, or educational events.
6. Privacy of Minors
Parents or legal guardians should provide consent before submitting personal information about a child. TCSA recognizes that many individuals affected by tethered cord syndrome are minors. Parents or legal guardians should provide consent before submitting personal information about a child. We do not knowingly collect personal information from children without appropriate parental or guardian involvement.
7. Email Communications and Opt-Out Rights
Individuals who subscribe to TCSA communications may receive:
- Educational updates
- Event announcements
- Advocacy opportunities
- Fundraising communications
Recipients may unsubscribe from non-essential emails at any time using the unsubscribe link
included in communications or by contacting TCSA directly.
8. Data Retention
TCSA retains personal information only as long as reasonably necessary to:
When information is no longer needed, we will take reasonable steps to securely delete or
anonymize it.
- Fulfill organizational purposes
- Maintain required financial or legal records
- Support ongoing programs and communications
- Comply with applicable laws and regulations
When information is no longer needed, we will take reasonable steps to securely delete or
anonymize it.
9. Third-Party Platforms and Links
TCSA may use third-party services for:
- Donation processing
- Email distribution
- Webinar hosting
- Event registration
- Surveys or forms
These third parties may have separate privacy policies governing their services. TCSA is not
responsible for the privacy practices of external websites or platforms.
10. Participant Rights
Depending on applicable law, individuals may have the right to:
- Request access to personal information
- Request correction of inaccurate information
- Request deletion of certain information
- Withdraw consent for future communications
- Ask questions regarding data practices
Requests may be submitted using the contact information below.
11. Changes to This Privacy Policy
TCSA may update this Privacy Policy periodically to reflect operational, legal, or organizational changes. Updated versions will be posted with a revised effective date. Continued participation in TCSA activities after changes are posted constitutes acceptance of the revised policy.
12. Contact Information
For questions, concerns, or requests regarding this Privacy Policy or TCSA’s handling of
personal information, please contact:
Tethered Cord Support Alliance (TCSA)
hello@tetheredcord.com
https://tetheredcord.com/contact-us/