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Privacy Policy

Copyright Statement

Some of the information including visual content provided on this website is sourced from DEBRA International and is used with permission. All rights to the original content are owned by DEBRA International. For more information, please visit www.debra-international.org​​​​

A legal disclaimer

The medical information provided on this website is intended solely for informational purposes. It is not a substitute for the advice, diagnosis, or treatment provided by a qualified healthcare professional. Always consult with your physician before starting any new medication or treatment plan. Butterfly Wings Organisation does not endorse any medications, tests, or treatments that may be mentioned

Privacy Policy - the basics

At Butterfly Wings Organisation, we are committed to protecting your privacy and ensuring a safe online experience for all of our users. This Privacy Policy outlines the types of personal information that we collect, how we use and protect that information, and the steps we take to safeguard your privacy when you visit our website.

By accessing or using our website, you agree to the terms outlined in this Privacy Policy. If you do not agree with the terms, please do not use our website.

1. Information We Collect

We collect two types of information from visitors to our website:

a. Personal Information: Personal information includes any details that can be used to identify you as an individual. This may include, but is not limited to, your name, email address, phone number, medical information, or other personally identifiable details. We collect this information when you voluntarily provide it to us, such as when you:

  • Register for our newsletter or other email communications.

  • Submit an inquiry or request information.

  • Use contact forms or comment sections.

b. Non-Personal Information: We may also collect non-personally identifiable information through cookies, log files, and other technologies. This information includes:

  • Browser type and version.

  • Device type.

  • IP address.

  • Pages viewed and interactions on the website.

  • Time and date of visits.

This data is used to analyze website traffic and improve the user experience.

2. How We Use Your Information

We use the information we collect for the following purposes:

  • To provide healthcare-related information and services.

  • To respond to inquiries or requests for more information.

  • To communicate with you about your use of the website, updates, or changes to the site or services.

  • To send you newsletters, health updates, and other relevant communications (if you have opted in).

  • To analyze and improve the functionality and content of the website.

3. Sharing Your Information

We are committed to keeping your information confidential and will not share your personal information with third parties, except in the following circumstances:

  • With Service Providers: We may share your information with trusted third-party service providers who assist us with website operations, communications, and analytics. These service providers are obligated to keep your information confidential and use it only to provide the services we request.

  • Legal Requirements: We may disclose your personal information if required by law or in response to a legal request by authorities, such as a subpoena or court order.

4. Use of Cookies and Tracking Technologies

Our website uses cookies and other tracking technologies to enhance the user experience. Cookies are small data files stored on your device that help us remember your preferences and improve our website's functionality.

You may choose to disable cookies through your browser settings, but please note that this may affect your ability to use certain features of the website.

5. Protection of Your Information

We take reasonable measures to protect your personal information from unauthorized access, alteration, or disclosure. These measures include physical, electronic, and administrative safeguards. However, no method of data transmission over the internet or data storage is 100% secure, and we cannot guarantee absolute security.

6. Photos and Visual Content

Our website may contain images, photos, and other visual content related to healthcare services for patients with rare skin conditions. These images may include individuals who have consented to their inclusion in the content. We are committed to respecting the privacy and dignity of all individuals depicted on our website. We ensure that any personal or sensitive information shared through visual content is handled with the utmost care and consent.

7. Links to Third-Party Websites

Our website may contain links to third-party websites that are not controlled or operated by us. We are not responsible for the privacy practices of these third-party sites, and we encourage you to review their privacy policies before providing any personal information.

8. Your Rights and Choices

You have the right to:

  • Access, update, or correct your personal information at any time.

  • Opt-out of receiving marketing emails or newsletters by following the unsubscribe instructions included in those communications.

  • Request the deletion of your personal information, subject to any legal or regulatory requirements that may require us to retain certain information.

To exercise any of these rights or for any questions about your personal information, please contact us at [+962 (0) 79 2242 383].

9. Changes to This Privacy Policy

We reserve the right to update or change this Privacy Policy at any time. Any changes will be posted on this page with an updated "Effective Date." Please review this Privacy Policy periodically to stay informed about how we are protecting your information.

10. Contact Us

If you have any questions or concerns about this Privacy Policy or the practices of our website, please contact us at:

www.butterflywings-eb.org
Email: info@butterflywings.org
Phone: +962 79 224 2383
Address: Amman- Jordan

Contact Us

For more information, reach out

Butterfly Wings is a charitable Organisation registered in Jordan (1531)
Amman | Jordan

Butterfly Wings Organisation is a member of the DEBRA International's global network. find out more


DEBRA International is the umbrella organisation for a worldwide network of national groups that
work on behalf of those affected by the rare genetic skin blistering condition, epidermolysis bullosa
(eb).

Butterfly wings organisation

The Butterfly skin charity

info@butterflywings-eb.org

+962 (0) 79 2242 383

© Copyright 2025, All Rights Reserved by butterfly wings organisation | This website is for informational purposes, always check with your physician before adopting any medical treatment.

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