Charcot Marie Tooth Foundation of India

Welcome to the official website of the Charcot Marie Tooth Foundation of India. This Privacy Policy explains how information is collected, used, stored, protected, and disclosed when you access our website, participate in our initiatives, submit forms, join the National CMT Patient Data Registry, contact us, or interact with our digital platforms and services.

We are committed to maintaining the privacy, confidentiality, and security of personal information while promoting awareness, education, advocacy, and community support related to Charcot-Marie-Tooth (CMT) disease.

1. About the Foundation

The Charcot Marie Tooth Foundation of India is a patient-focused nonprofit initiative working to improve awareness, information accessibility, patient support, advocacy, and community engagement for individuals and families affected by Charcot-Marie-Tooth disease in India.

Our website may include:

• Educational resources
• Awareness materials
• Research and clinical trial updates
• Patient support initiatives
• Volunteer and membership programs
• Event registrations
• Contact and inquiry forms
• National CMT Patient Data Registry
• Links to external medical, scientific, or research resources

2. Information We Collect

Depending on your interaction with our website or initiatives, we may collect the following categories of information:

A. Personal Information

• Full name
• Age or date of birth
• Gender
• Email address
• Phone number
• City, state, and country
• Emergency or guardian details (where applicable)

B. Medical & CMT-Related Information

Voluntarily submitted information may include:

• CMT type/subtype
• Symptoms and disease history
• Mobility or assistive device status
• Genetic testing information
• Diagnostic reports
• Treatment history
• Rehabilitation or therapy details

C. Registry & Community Information

• Patient experiences
• Participation in awareness or support programs
• Survey responses
• Community engagement information

D. Technical & Website Usage Information

When using our website, certain technical information may automatically be collected, including:

• IP address
• Browser type
• Device information
• Pages visited
• Date and time of access
• Cookies and analytics data

3. Purpose of Information Collection

We may collect and use information for the following purposes:

• Maintaining the National CMT Patient Data Registry
• Improving awareness and educational initiatives
• Understanding disease patterns and patient needs
• Facilitating patient support and community engagement
• Responding to inquiries and communication requests
• Organizing events, webinars, and awareness programs
• Statistical and anonymized analysis
• Strengthening future research readiness and collaborations
• Improving website functionality and user experience
• Complying with legal or regulatory obligations

4. National CMT Patient Data Registry

The National CMT Patient Data Registry is an awareness and patient-support initiative intended to better understand the CMT community within India.

The registry:

• Is voluntary in nature
• Is not a clinical trial or treatment program
• Does not provide medical diagnosis or medical advice
• Does not involve experimental interventions

Information collected through the registry may be used in anonymized or aggregated form to:

• Understand patient demographics and disease trends
• Support awareness and advocacy efforts
• Improve representation of Indian patients in the broader CMT ecosystem
• Facilitate future research readiness initiatives

5. Consent

By submitting information through our website, forms, or registry, you voluntarily consent to the collection and use of information in accordance with this Privacy Policy.

For minors or dependent individuals, information should only be submitted by a parent, legal guardian, or authorized caregiver.

6. Data Protection & Security

We implement reasonable administrative, organizational, and technical safeguards to help protect information from unauthorized access, misuse, alteration, disclosure, or destruction.

Access to personal information is restricted to authorized personnel, volunteers, technical administrators, or approved service providers who require access for legitimate operational purposes.

While we strive to protect information responsibly, no internet-based platform or electronic storage system can guarantee absolute security.

7. Confidentiality & Disclosure

Personally identifiable information will not be publicly disclosed without explicit consent, except:

• Where required by law
• To comply with legal obligations
• To protect rights, safety, or security
• With authorized service providers assisting operational functions under confidentiality obligations

We do not sell personal information to third parties.

8. Anonymized & Aggregated Data

We may use anonymized, de-identified, or aggregated data for:

• Awareness campaigns
• Educational publications
• Statistical summaries
• Community reports
• Healthcare and advocacy discussions
• Research-readiness initiatives

Such data will not intentionally identify individual participants.

9. External Links & Third-Party Resources

Our website may contain links to:

• Clinical trial platforms
• Research organizations
• PubMed and scientific publications
• Hospitals and healthcare institutions
• External informational websites

We are not responsible for the privacy practices, content, or policies of external websites or services.

10. Cookies & Analytics

Our website may use cookies or analytics tools to:

• Improve website functionality
• Understand visitor behavior
• Enhance user experience
• Monitor website performance

Users may disable cookies through browser settings; however, certain website features may be affected.

11. Participant Rights

Subject to applicable laws and operational requirements, participants may request to:

• Access their information
• Correct inaccurate information
• Withdraw participation
• Request deletion of identifiable information

Requests may be submitted through the contact information provided below.

12. Data Retention

Information may be retained for as long as reasonably necessary to fulfill the purposes outlined in this Privacy Policy, comply with legal obligations, maintain records, support awareness initiatives, or manage registry operations.

13. Children & Minors

Information relating to minors should only be submitted by parents, legal guardians, or authorized caregivers.

We encourage responsible supervision when sharing health-related information concerning children.

14. Medical Disclaimer

Information provided on this website is intended solely for educational and awareness purposes and should not be interpreted as medical advice, diagnosis, or treatment guidance.

Users are advised to consult qualified healthcare professionals regarding medical decisions, diagnosis, treatment options, or participation in clinical research.

15. Research & Clinical Trial Information Disclaimer

The Foundation may share publicly available information regarding global research initiatives, scientific publications, emerging therapies, AI-based modeling approaches, and clinical trials related to CMT.

The Charcot Marie Tooth Foundation of India:

• Does not conduct or sponsor most of the research projects listed
• Does not guarantee the accuracy or outcomes of external studies
• Does not endorse investigational therapies unless explicitly stated

All referenced studies and trials remain the responsibility of their respective institutions, organizations, or sponsors.

16. Changes to This Privacy Policy

We may update this Privacy Policy periodically to reflect operational, legal, technological, or regulatory changes.

Updated versions will be published on this page with the revised effective date.

17. Contact Information

For privacy-related questions, corrections, withdrawal requests, or concerns, please contact:

Charcot Marie Tooth Foundation of India
📧 connect@cmtfoi.org
🌐 CMT Foundation of India

18. Acceptance of Policy

By accessing this website or submitting information through our forms, registry, or digital platforms, you acknowledge that you have read, understood, and agreed to this Privacy Policy.