Global Privacy Policy

Last Updated: November 15, 2025

Parents Against XLP2 (“we,” “us,” “our”) is committed to protecting the privacy and personal information of all individuals who visit our website, parentsagainstxlp2.org (the “Site”), contact us, or participate in our activities.
This Privacy Policy explains how we collect, use, store, and protect your information, and outlines your rights under applicable global privacy laws.

By using our Site, you agree to the practices described in this Privacy Policy.

1. Who We Are

Parents Against XLP2 is a nonprofit patient-advocacy initiative dedicated to raising awareness, supporting families, and accelerating research related to XLP2.

For any privacy-related questions, please contact us at:
📧 contact@parentsagainstxlp2.org

2. Information We Collect

We collect information in the following ways:

A. Information You Provide Directly

When you:

• Submit a contact form

• Join our mailing list

• Share your family story

• Participate in meetings or events

• Email us

You may provide:

• Name

• Email address

• Country or region

• Optional photos or personal stories

• Details about your family’s experience with XLP2

• Any other information you choose to share

B. Information Collected Automatically

We may collect:

• IP address

• Browser type and settings

• Device information

• Pages visited and referring website

• Basic analytics data

We use this information to maintain and improve our website. We do not use cookies for advertising or tracking outside our Site.

C. Sensitive Health Information

Families may voluntarily share health-related details about themselves or their children.
We treat this information with the highest level of confidentiality and use it only for the purpose you authorize (for example, adding your story to the website).

We never share health information publicly unless you explicitly give written permission.

3. How We Use Your Information

We use your information to:

• Respond to your messages

• Communicate about community calls, events, and updates

• Publish stories (only if you grant permission)

• Build a supportive global XLP2 community

• Improve our website and advocacy efforts

• Comply with legal and nonprofit governance requirements

We do not sell, rent, or trade your information to anyone.

4. Legal Basis for Processing (GDPR / UK GDPR)

For individuals in the EU/UK, we process your personal data on the basis of:

• Consent (e.g., newsletter signup, sharing your story)

• Legitimate interest (e.g., running the website, responding to inquiries)

• Legal obligation (e.g., nonprofit record-keeping)

You may withdraw your consent at any time by contacting us.

5. How We Share Information

We may share information only in the following limited situations:

• Service Providers:
  Website hosting providers, email platforms, or analytics tools that help us run the site.

• Legal Requirements:
  If required to comply with law, safety, or nonprofit governance rules.

• With Your Permission:
  For example, if you ask us to publish your story or photo.

We do not share personal information with researchers, companies, or other organizations without direct consent.

6. International Data Transfers

Because we operate globally and use international service providers, your information may be processed outside your home country.
We use reasonable safeguards to protect your information under applicable laws.

7. Data Security

We take reasonable technical and organizational measures to protect your information, including:

• Encryption where possible

• Secure storage

• Limited internal access

• Use of reputable service providers

No system is completely secure, but we take privacy very seriously.

8. Data Retention

We retain personal information only as long as necessary for:

• The purposes described in this policy

• Legal requirements

• Nonprofit governance

• Or until you request deletion

You may ask for your information to be deleted at any time.

9. Your Privacy Rights

Depending on your location, you may have the right to:

• Access your personal data

• Correct inaccurate information

• Request deletion

• Withdraw consent

• Object to processing

• Request a copy of your data

• Limit or restrict processing

• File a complaint with your local data-protection authority

To exercise any of these rights, contact us at:
📧 contact@parentsagainstxlp2.org

We will respond within applicable legal timeframes.

10. Children’s Privacy

We understand the sensitivity of information about children affected by XLP2.
We only collect information about children when a parent or guardian voluntarily provides it.

We do not knowingly collect information directly from children under 16.

11. Third-Party Links

Our Site may include links to external websites.
We are not responsible for their privacy practices. Please review their policies separately.

12. Changes to This Privacy Policy

We may update this Policy occasionally to reflect changes in laws or our practices.
The “Last Updated” date at the top will indicate when changes were made.

13. Contact Us

For questions, concerns, or privacy requests, please contact:

📧 contact@parentsagainstxlp2.org