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Privacy Policy

At APDS Rare Disease Coalition, we value your trust and are committed to protecting your privacy. This Privacy Policy explains how we collect, use, store, and safeguard the information you provide when visiting our website, making a donation, registering for events, subscribing to communications, or interacting with our organization.

By using our website, you consent to the practices outlined in this Privacy Policy.
 

Our Mission

APDS Rare Disease Coalition exists to raise awareness, educate communities, support families, advocate for patients, and advance research related to Activated PI3K Delta Syndrome (APDS). We are committed to handling your information responsibly while supporting this mission.
 

Information We Collect

We may collect personal information that you voluntarily provide, including:

  • Name

  • Email address

  • Mailing address

  • Phone number

  • Donation information

  • Event registration information

  • Volunteer applications or inquiries

  • Information submitted through contact forms

  • Newsletter subscriptions
     

In addition, certain information may be collected automatically when you visit our website, including:

  • IP address

  • Browser type and version

  • Device information

  • Pages visited and time spent on our website

  • Referral source

  • Cookies and website analytics data
     

How We Use Your Information

The information we collect may be used to:

  • Respond to questions, comments, or requests

  • Process donations securely

  • Register participants for events and awareness walks

  • Communicate updates about APDS programs, initiatives, and advocacy efforts

  • Send newsletters and educational resources

  • Improve our website and user experience

  • Manage volunteer opportunities

  • Comply with legal and regulatory requirements
     

We use personal information solely to support the mission and activities of APDS Rare Disease Coalition.
 

Donations and Payment Processing

Donations made through our website may be processed by trusted third-party payment providers.

We do not store complete credit card numbers or payment information on our servers. All payment transactions are handled through secure, encrypted payment processing platforms.

We encourage donors to review the privacy policies of any third-party donation providers our organization uses.


Email Communications

If you subscribe to our newsletter, register for an event, or otherwise provide your email address, we may send communications regarding:

  • APDS awareness campaigns

  • Educational resources

  • Event announcements

  • Fundraising initiatives

  • Research updates

  • Volunteer opportunities

  • Organization news

You may unsubscribe from these communications at any time by clicking the unsubscribe link included in our emails.


Cookies and Website Analytics

Our website may use cookies and similar technologies to improve functionality and better understand visitor engagement.


Cookies may help us:

  • Analyze website traffic

  • Improve website performance

  • Customize user experiences

  • Measure the effectiveness of awareness campaigns
     

You may choose to disable cookies in your browser settings, though some website features may not function properly.
 

Information Sharing

APDS Rare Disease Coalition respects your privacy.

We do not sell, rent, trade, or otherwise share your personal information with third parties for marketing purposes.


Information may be shared only when necessary:

  • With trusted service providers who assist in operating our website or organization

  • To process donations or event registrations

  • To comply with legal obligations

  • To protect the rights, safety, and security of our organization, supporters, or community members


Data Security

We implement reasonable administrative, technical, and physical safeguards designed to protect personal information from unauthorized access, disclosure, alteration, or destruction.
 

While we strive to protect your information, no internet transmission or electronic storage system can be guaranteed completely secure.


Children's Privacy

Our website is intended for a general audience and is not directed toward children under the age of 13.

We do not knowingly collect personal information from children without parental consent. If you believe a child has provided personal information through our website, please contact us, and we will promptly remove the information.


Third-Party Websites

Our website may contain links to third-party websites, including research organizations, advocacy groups, sponsors, donation platforms, and educational resources.
 

APDS Rare Disease Coalition is not responsible for the privacy practices or content of these external websites. We encourage visitors to review the privacy policies of any third-party sites they access.


Your Privacy Rights

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

  • Request access to personal information we maintain about you

  • Request corrections to inaccurate information

  • Request deletion of your personal information

  • Withdraw consent for communications

  • Opt out of marketing emails
     

To exercise these rights, please contact us using the information below.


Changes to This Privacy Policy

We may update this Privacy Policy periodically to reflect changes in our practices, website functionality, legal requirements, or organizational needs. Any updates will be posted on this page and will become effective immediately upon posting.


Contact Us

If you have questions about this Privacy Policy or how your information is handled, please contact us.


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