Privacy Policy
What We Collect
When you submit a form on this website, we collect the information you choose to provide. This may include your name or preferred name, email address, country or region, and information you share about your NXG diagnosis, associated conditions, treatments, and experiences.
If you indicate that you would like to receive information about future research opportunities, we will retain your contact information in order to communicate with you about those opportunities.
How We Use Your Information
We use the information you provide to:
- Respond to inquiries submitted through our contact forms.
- Better understand the experiences of individuals affected by NXG.
- Support advocacy, educational, and community-building efforts.
- Inform future research collaborations and initiatives.
- Contact individuals who have expressed interest in learning about future research opportunities.
We do not sell, rent, or share your personal information with third parties for marketing purposes.
Patient Registry Information
Information submitted through the NXG Alliance Patient Registry Initiative is stored securely and used to better understand the NXG community.
NXG Alliance may analyze and share de-identified and aggregated information (for example, overall statistics regarding diagnoses, associated conditions, or treatments) to support advocacy efforts and advance understanding of NXG.
Personal identifying information, including names and email addresses, will not be shared with researchers or other third parties without your additional permission.
If you indicate that you are interested in future research opportunities, NXG Alliance may contact you directly with information about studies or clinical trials. Participation in any future research study is entirely voluntary, and individuals must contact the study team directly if they wish to participate.
Cookies and Analytics
This website may use basic analytics tools to understand how visitors find and use the site. This information is collected in aggregate and is not used to personally identify individual visitors.
Your Rights
You may request access to, correction of, or deletion of your personal information at any time by contacting us at nxgalliance@gmail.com. We will make reasonable efforts to honor such requests promptly.
Contact
Questions about this Privacy Policy may be directed to nxgalliance@gmail.com.