Privacy policy

KCNT1 Epilepsy Foundation – Privacy Notice 

Updated: March 28, 2025 
 

1. Who We Are 

The KCNT1 Epilepsy Foundation is committed to protecting and respecting your privacy. This privacy notice explains how we collect, use, and protect personal data across our activities, including our patient census initiative, communications with healthcare professionals, and donor outreach. 

2. What Information We Collect 

We collect personal information that you provide directly to us through our survey, registration forms, or communications. This may include, but is not limited to, your name, contact details, medical diagnosis, and professional affiliation if you are a healthcare provider. 

3. How We Use Your Information 

Your personal data is used to: 

- Facilitate your participation in our census and studies related to KCNT1 variants. 
- Update our global patient count and research databases. 
- Communicate with you about events, research findings, initiatives, and community opportunities. 
- Share updates about KCNT1-related research and clinical trials (if you opt in). 
- Enable collaboration with academic or industry stakeholders (with your consent). 
- Send donation-related communications to subscribers (with your consent). 

4. Specific Processing Activities 

4.1 Communications for Fundraising Purposes 

If you subscribe to our newsletter or register with us, we may contact you occasionally with opportunities to support our mission through charitable donations. You can opt out at any time by using the unsubscribe link or contacting manager@kcnt1epilepsy.org. We do not sell or rent your contact information. 

4.2 Healthcare Practitioner Outreach 

We collect professional contact information from public sources or patient referrals to invite clinicians to participate in KCNT1 research communications. This may include your name, email, and affiliation. No patient-identifying data is shared. Your information will only be used with your explicit opt-in consent. 

5. Legal Basis for Processing 

We process your personal data based on your explicit consent, which you provide by opting in through our forms or communication tools. 

6. Who We Share Your Data With 

Your data is only used for the purposes outlined above and is not shared without your explicit consent, except to comply with legal obligations. We never share SMS opt-in data with third parties. 

7. How We Protect Your Data 

We employ robust technical and organizational measures to protect your data. Access is limited to authorized personnel only. 

8. Your Rights 

Under GDPR, you have the right to access, correct, delete, or restrict processing of your personal data. You may also withdraw consent at any time. Contact us at manager@kcnt1epilepsy.org to exercise your rights. 

9. How to Contact Us 

If you have questions or wish to exercise your data rights, contact our Data Protection Officer at manager@kcnt1epilepsy.org. 

10. Changes to This Privacy Notice 

We may update this notice periodically. Significant changes will be posted to our website or communicated as required by law.