Effective Date: June 2026
Melorheostosis Association (“we,” “our,” or “us”) respects your privacy and is committed to protecting the personal information you share with us through our website, programs, events, advocacy initiatives, and communications.
This Privacy Policy explains what information we collect, how we use it, when we share it, and the choices available to you.
1. Information We Collect
Information You Provide Voluntarily
We may collect personal information that you voluntarily provide when you:
- Make a donation
- Subscribe to newsletters or updates
- Register for events or webinars
- Complete surveys or forms
- Contact us for support or information
- Participate in patient stories, awareness campaigns, or community programs
- Apply to volunteer or partner with us
This information may include:
- Name
- Email address
- Mailing address
- Phone number
- Donation information
- Organization or employer affiliation
- Demographic information
- Information you choose to share about your experience, condition, or advocacy interests
- Sensitive or Health-Related Information
As a nonprofit or advocacy organization, individuals may voluntarily share personal health information, medical experiences, diagnoses, or caregiving information with us.
We only collect this information: With your voluntary consent; for purposes explained at the time of collection; and/or to support education, advocacy, research, community support, or program participation.
We do not use this information for commercial purposes.
Information Collected Automatically
When you visit our website, we may automatically collect: IP address; Browser type; Device information; Pages visited; Referral sources; Time spent on pages; Cookies and analytics data
This helps us improve website performance, accessibility, and user experience.
2. How We Use Information
We may use your information to: Provide programs, resources, and services; process donations and send receipts; communicate organizational updates and newsletters; respond to inquiries and support requests; manage events and registrations; conduct advocacy and awareness initiatives; improve website functionality and communications; analyze engagement and outreach effectiveness; support research or educational initiatives; comply with legal obligations
We may also use anonymized or aggregated data for reporting, impact measurement, or grant applications.
3. Donations and Payment Processing
Donations made through our website will be processed by third-party payment processors. We do not store full payment card information on our servers. Third-party processors may collect information necessary to securely complete your transaction.
4. Cookies and Analytics
Our website may use cookies and similar technologies to: understand website traffic; improve user experience; remember preferences; analyze engagement with content and campaigns
We may use services such as: Google Analytics; Email communication platforms; Website hosting or donor management tools
You can manage cookie preferences through your browser settings.
5. Sharing of Information
We do not sell personal information.
We may share information with trusted service providers that help us operate our organization, including: Payment processors; Email communication providers; Event platforms; Website hosting providers; Technology and analytics vendors. These providers are only permitted to use information as necessary to provide services on our behalf.
We may also disclose information: when required by law; to protect the rights or safety of our organization or others; with your explicit consent
6. Community Stories, Testimonials, and Advocacy Participation
If you voluntarily submit: Personal stories, Testimonials, Photos, Videos, Advocacy statements, we may publish or share that content through our website, social media, educational materials, or awareness campaigns with your permission.
You may request removal of published content by contacting us.
7. Data Security
We use reasonable administrative, technical, and organizational safeguards to help protect personal information from unauthorized access, disclosure, or misuse.
However, no method of electronic transmission or storage is completely secure, and we cannot guarantee absolute security.
8. Your Rights and Choices
Depending on your location, you may have rights to: access personal information we hold about you; request corrections; request deletion of your information; opt out of marketing communications; withdraw consent for certain uses
You may unsubscribe from emails at any time using the unsubscribe link included in communications.
To exercise your rights, contact us using the information below.
9. Children’s Privacy
Our website is not intended for children under 13 without parental involvement. We do not knowingly collect personal information from children without appropriate consent where required.
10. Third-Party Links
Our website may contain links to external websites operated by other organizations, research institutions, sponsors, or social media platforms.
We are not responsible for the privacy practices or content of third-party websites.
11. Data Retention
We retain personal information only as long as reasonably necessary for: Organizational operations, Legal and accounting obligations, Donor records, Program administration, Advocacy or research participation purposes
12. Changes to This Privacy Policy
We may update this Privacy Policy periodically. Updates will be posted on this page with a revised effective date.
13. Contact Us
If you have questions about this Privacy Policy or how your information is handled, please use the website form to contact us.