Privacy Policy

This Notice describes how your personal information may be used and disclosed and how you can access this information. Please review it carefully.

If you have questions about this privacy notice, please contact us at turnersyndrome@outlook.com.

We understand that information about you and your health is personal. The Turner Syndrome Society (TSS) is committed to protecting your personal information. We create records of support services and care coordination provided through our organization. We need these records to provide quality support and comply with legal requirements.

• For Support Services: We may use your information to coordinate support services, educational resources, and healthcare referrals. For example, we may share information with medical professionals in our network to help coordinate care or provide relevant educational materials about Turner Syndrome.
• For Payment: We may use your information for payment purposes when applicable, such as processing membership fees or donation transactions.
  For Organizational Operations: We may use your information to improve our care services, evaluate program effectiveness, and contact you about your presence for Turner Syndrome-related events and resources.

• Research: We may use information for research purposes to improve understanding of Turner Syndrome, but only after going through appropriate approval processes. Any published research will not identify individuals.
• Fundraising: We may contact you for fundraising efforts, but you can opt out of these communications at any time.
• Required by Law: We will share your information when required by central, state, or local laws.

You have the following rights:

• Request to inspect and copy your records
• Request amendments to your information
• Receive an accounting of certain disclosures
• Request restrictions on information use
• Request confidential communications
• Receive notifications of privacy breaches
• Obtain a paper copy of this notice

We maintain strict confidentiality of information shared in support groups and community forums. Participants are required to respect the privacy of other members, but TSS cannot guarantee that other participants will maintain confidentiality.

We implement reasonable security measures to protect your information, including:

• Physical security of paper records
• Electronic security measures for digital information
• Staff training on privacy and security practices
• Confidentiality agreements with business partners

We reserve the right to change this policy. Any changes will apply to information we already have and information we receive in the future. We will post the current notice on our website with its effective date.

To exercise your rights or have a question, contact:

Tel: +91 94106 61066

Mail: turnersyndrome@outlook.com

Effective Date: March, 2025.