Privacy Policy & Terms of Use

Definition of “the Site”

For purposes of this Privacy Policy and Terms of Use, the term “Site” means:

• The Foundation’s primary website at celiac.org
• Any related subdomains (e.g., *.celiac.org)
• theceliacsociety.org, the website of the Foundation’s Scientific Advisory Committee (SSCD), which operates under the management of the Celiac Disease Foundation
• Donation and fundraising portals
• Event registration systems
• Research platforms, including iCureCeliac® and iQualifyCeliac™
• Survey and study tools hosted or managed by the Foundation (e.g., SurveyMonkey, Google Docs, or similar)
• Any other online services operated or controlled by the Celiac Disease Foundation

Together, these Foundation-operated websites, subdomains, and online platforms constitute the “Site.”

Privacy at a Glance

 

What We Collect	Why We Collect It	Who We Share It With	How Long We Keep It	Your Choices
Contact Info (name, email, address, phone)	Donations, communications, responding to inquiries, event invitations	Service providers (mailing, marketing, technology support; incentive vendors such as Amazon or Tango for compensation)	7 years, then securely deleted or anonymized	Opt out of emails; request corrections/deletion (US, GDPR, and PIPEDA rights apply)
Billing Info (credit card, billing address)	To process donations or purchases	Payment processors only	Not retained after transaction	Use secure donation/payment portals
Health Info (symptom assessments, registry participation, research surveys)	To generate assessment feedback, provide educational tools, support research, or connect to registry/trials	Research partners, service providers, and incentive vendors (if applicable)	7 years, or per IRB protocol	Provide health info without contact details; opt out of follow-up communications (US, GDPR, and PIPEDA rights apply)
Internet/Device Data (cookies, IP, browsing across the Site)	Site security, analytics, advertising	Analytics and advertising partners (Google, etc.)	Varies by cookie type	Manage cookies via banner, browser settings, or opt-out tools

About Our Services

The Foundation provides free educational resources, advocacy and awareness programs, patient support tools, clinical trial and research opportunities, and community events to improve the lives of people with celiac disease and their families.

Our services are intended primarily for U.S. residents, though our online platforms are accessible worldwide.

Note: We do not actively market to individuals outside the U.S., but global visitors may access our content and exercise applicable privacy rights (e.g., GDPR, PIPEDA).

Personal Contact Information

When you donate, purchase, inquire, complete surveys, or subscribe, we may collect your name, mailing address, phone, and email.

We use this information to:

• Provide receipts and financial reports
• Confirm and process donations/purchases
• Respond to inquiries
• Send updates about programs, clinical trials, or events
• Thank you and invite participation (volunteering, advocacy, fundraising)

Legal Basis for Processing:

• Donations/purchases: Contractual necessity
• Email communications: Consent (withdraw anytime)
• Inquiries: Legitimate interest in customer service
• Marketing: Consent (opt-in)

Retention:
We keep contact information for 7 years after your last interaction, then securely delete or anonymize it, unless you request earlier deletion.

Sharing:
We share contact information only with trusted vendors (mailing, shipping, technology, analytics, research partners) under confidentiality agreements.

• In limited cases, if you participate in a research study that offers compensation or incentives, we may share your name and contact information with a third-party vendor (such as Amazon or Tango) solely for the purpose of fulfilling the incentive.

We may also share de-identified, aggregate data for research or reporting.

Billing Information

When you make a donation or purchase a product, we collect billing details such as your billing address and credit card number. Transactions are processed securely through trusted third-party payment processors that comply with applicable Payment Card Industry Data Security Standards (PCI DSS).

• Your credit card information is transmitted directly to the payment processor and is not stored by the Foundation.
• We do not retain credit card numbers after the transaction is authorized.
• We do not share your billing information with any other parties beyond the payment processors who handle your transaction securely.

Other Contact Information We Collect

If you ask us to notify someone of a tribute or memorial donation, we will collect that person’s contact details only to send the notification. We do not use or share this information for any other purpose.

Health Information

The Foundation may collect health-related information in the following ways:

1. Symptoms Assessment Tool
   When you complete our online Symptoms Assessment Tool, you may provide information about your symptoms or medical history.
   • This information is used to generate educational feedback and may be de-identified and aggregated to support research and improve our tools.
   • You do not need to provide contact information to use the tool. At the end, you may optionally provide your email address if you want a printable letter for your doctor or access to free products.
   • Health data entered in the tool is not treated as HIPAA-defined Protected Health Information (PHI), as the Foundation is not a covered entity under HIPAA.
2. iCureCeliac® Patient Registry and iQualifyCeliac™ Research Platform
   This Privacy Policy also applies to the iCureCeliac® patient registry and iQualifyCeliac™ research platform, which are operated by the Foundation.
   • Participation in these programs is entirely voluntary.
   • Before you can submit personal health information, you must review and agree to a separate Institutional Review Board (IRB)-approved informed consent form.
   • The informed consent documents provide additional details about how your health information will be collected, used, stored, and shared for research purposes. In the event of any difference, the consent form will control the handling of your health data.
3. Research Surveys and Studies
   The Foundation may also conduct other research surveys and studies, including those hosted on trusted third-party platforms (such as SurveyMonkey or Google Docs).
   • Participation is voluntary.
   • Some studies require IRB-approved consent forms; others may require only a direct consent statement before you provide information. In both cases, you will be informed of how your information will be used before you agree to share it.
   • If a study offers compensation or incentives, we may share your contact information with a trusted third-party vendor (such as Amazon or Tango) solely for the purpose of delivering your incentive.
   • Data collected in these studies may be de-identified and aggregated for research and reporting purposes.
   • While the Foundation takes steps to ensure the security of data on third-party platforms, your participation is also subject to the privacy and security policies of the platform provider.

Cookies & Tracking

When you use any part of the Site, we may store information in your browser in the form of “cookies” or similar technologies.

We use cookies for:

• Essential site functionality (always active)
• Analytics (understand trends, improve services)
• Marketing/retargeting (reminders to donate, revisit site)

Your choices:

• Accept/decline non-essential cookies via our banner
• Adjust settings anytime in your browser
• Use our [Manage Cookies link/button – placeholder for integration]
• Opt out of Google ads via Google’s opt-out page

Website Browsing

You may browse Foundation-operated Sites without submitting personal information. We may collect:

• Standard server logs (IP address, browser, date/time, pages visited)
• Marketing source codes (cookies to track campaign effectiveness, deleted when you close your browser)

How to View, Correct, or Delete Your Info

You may:

• Use the “Manage Subscriptions/Unsubscribe” link in any email
• Contact us:

Celiac Disease Foundation
21300 Victory Boulevard, Suite 300
Woodland Hills, CA 91367
Email: info@celiac.org

Phone: 844.593.8169 x101

California Privacy Rights

This section applies to California residents under the California Consumer Privacy Act (CCPA) and California Privacy Rights Act (CPRA).

As a California resident, you have the following rights regarding your personal information:

Right to Know

You have the right to request that we disclose:

• The categories of personal information we have collected about you
• The categories of sources from which we collected your personal information
• Our business purpose for collecting your personal information
• The categories of third parties with whom we share your personal information
• The specific pieces of personal information we have collected about you

Right to Delete

You have the right to request that we delete personal information we have collected from you, subject to certain exceptions (e.g., to complete a transaction, comply with legal obligations, or maintain donation records for tax purposes).

Right to Correct

You have the right to request that we correct inaccurate personal information we maintain about you.

Right to Opt-Out of Sale or Sharing

Under California law, sharing personal information for targeted advertising may constitute a “sale” or “share.” We use cookies and similar technologies that may share your information with third-party advertisers for retargeting purposes.

You have the right to opt out of this sharing. You may exercise this right by:

• Adjusting your cookie preferences through our cookie banner when you visit our site
• Visiting Google’s advertising opt-out page
• Contacting us using the information below

Right to Non-Discrimination

We will not discriminate against you for exercising any of your California privacy rights. You will not be denied services, charged different prices, or provided a different level of service for exercising your rights.

Categories of Personal Information We Collect

Category	Examples	Collected?	Shared with Third Parties?
Identifiers	Name, email address, mailing address, phone number, IP address	Yes	Yes (service providers only)
Financial Information	Credit card number, billing address	Yes	Yes (payment processors only, not retained after processing)
Internet Activity	Browsing history, website interactions	Yes	Yes (analytics and advertising partners)
Geolocation Data	General location based on IP address	Yes	Yes (analytics partners)

Business Purposes for Collection:

• Providing and improving our services
• Processing donations and transactions
• Communicating about clinical trials, webinars, advocacy programs, and events
• Marketing and advertising
• Analytics and research
• Legal compliance

How to Submit a Request

To exercise any of the rights described above, please contact us at:

Email: info@celiac.org
Phone: 844.593.8169 x101

Mail: Celiac Disease Foundation, Attn: Privacy Rights, 21300 Victory Blvd, Suite 300, Woodland Hills, CA 91367

We will respond to verifiable requests within 45 days. We may request additional information to verify your identity before processing your request.

Privacy Rights Under the EU General Data Protection Regulation (GDPR)

This section applies to residents of the European Union (EU) and European Economic Area (EEA).

The Foundation does not specifically target or market our services to individuals in the EU/EEA. Our services are intended primarily for U.S. residents. However, our website is accessible worldwide, and if you are an EU/EEA resident who chooses to access our site or sign up for our services, the following rights apply to you under the GDPR.

Please note that our servers are located in the United States. By using our services, you acknowledge that your personal information will be transferred to and processed in the United States.

Your GDPR Rights

Right to Access: You have the right to access your personal data and to ensure your personal information is accurate.

Right to Rectification: You have the right to request correction of inaccurate personal data.

Right to Erasure (“Right to be Forgotten”): You have the right to request deletion of your personal information, subject to certain legal obligations we may have to retain it.

Right to Restrict Processing: You have the right to request that we restrict the processing of your personal information under certain circumstances.

Right to Data Portability: You have the right to receive your personal information in a machine-readable format and to transfer it to another service provider.

Right to Object: You may object to processing of your personal information, including for direct marketing purposes. We will honor all opt-out requests for marketing communications.

Right to Withdraw Consent: Where we process your personal information based on consent, you have the right to withdraw that consent at any time. Withdrawal will not affect the lawfulness of processing based on consent before its withdrawal.

Legal Basis for Processing

We process your personal information based on:

• Consent: For marketing communications and non-essential cookies
• Legitimate interests: For website analytics, fraud prevention, and improving our services
• Legal obligations: For maintaining donation records and tax compliance

Data Retention

We retain personal data for seven (7) years after your last interaction with us or until you request deletion, whichever comes first.

How to Exercise Your Rights

To exercise these rights, please contact our Data Privacy Officer at:

Email: julia.mcbeth@celiac.org
Phone: 844.593.8169 x101

If you wish to raise a complaint about how we have handled your personal information, you can contact our Data Privacy Officer, who will investigate the matter and respond to you promptly. If you are not satisfied with our response, you have the right to lodge a complaint with your local data protection authority in your country of residence.

This section applies to residents of Canada.

The Foundation does not specifically target or market our services to individuals in Canada, but Canadian residents may choose to access our Site, make donations, or participate in research opportunities.

If you are a resident of Canada, you have rights under the Personal Information Protection and Electronic Documents Act (PIPEDA), including the right to:

• Know why your personal information is being collected, how it will be used, and to whom it may be disclosed.
• Access your personal information held by the Foundation and request corrections if it is inaccurate or incomplete.
• Withdraw your consent at any time, subject to legal or contractual restrictions.
• Expect that your personal information will be retained only as long as necessary and safeguarded appropriately.

To exercise these rights, please contact us at:

Email: info@celiac.org

Phone: 844.593.8169, x101

Mail: Celiac Disease Foundation, Attn: Privacy Rights, 21300 Victory Blvd, Suite 300, Woodland Hills, CA 91367

Please note that your personal information will be processed in the United States, where privacy laws may differ from those in Canada.

International Visitors

The Foundation is based in the United States, and our services are intended primarily for US residents. However, individuals from other countries may access the Site. We will handle your personal information in accordance with this Privacy Policy, and you may have additional rights under the laws of your country (for example, the United Kingdom Data Protection Act 2018 or Brazil’s LGPD).

If you are a resident of a country not specifically mentioned in this Privacy Policy and wish to exercise your privacy rights under local law, please contact us at info@celiac.org.

Children's Privacy

We do not knowingly collect information from children under 13 years of age.

For minors under 18, parental/guardian consent is required if any personal information is submitted (e.g., donations in a child’s honor, teen program registrations, registry or clinical trial participation).

Corporate Changes

If the Foundation undergoes a merger, acquisition, or transfer of assets, your data may be transferred accordingly. It will remain protected under this Policy unless changes are made in compliance with the “Changes” section.

Links to Other Sites

This website contains links to other sites, including ones that may gather personal contact information. The Foundation is not responsible for the privacy practices or content of such websites. However, any personal information we obtain through other sites is treated as if it was gathered on our site, and this privacy policy applies.

 

Changes to This Policy

We may update this Privacy Policy from time to time. The “Last Updated” date will be revised, and material changes will be announced prominently on our homepage.

Contact Us

Thank you for taking the time to review our Privacy Policy. If you have any questions about these policies or your dealings with this website, you can contact:

Celiac Disease Foundation
21300 Victory Boulevard, Suite 300
Woodland Hills, CA 91367
Phone: 844.593.8169, x101
Email: info@celiac.org

By viewing and/or using this website, you are agreeing to all of the terms and conditions explained below.

General Terms

For purposes of this User Agreement, the term “Site” has the meaning set forth in the “Definition of the Site” section above. The Site is provided as a complimentary information service by the Celiac Disease Foundation, with the express condition that you agree to be bound by the terms and conditions set forth in this User Agreement.

The Foundation reserves the right to change these Terms and Conditions at any time, and you must consult the most recent version of this User Agreement (not an older cached version) each time you view or use the Site. Do not use the Site if you do not agree to all of the following terms and conditions.

Intellectual Property and Hyperlinks

You agree to be bound by the terms and conditions set forth under the Service Marks, Copyright, and Hyperlinks sections of this User Agreement and Terms and Conditions.

Representations and Warranties

You acknowledge that the information on the Site is provided “as is” for general information only. The Foundation makes no representations or warranties of any kind regarding the Site, including but not limited to any warranties of accuracy, completeness, currency, reliability, merchantability, or fitness for a particular purpose, or any warranty that these pages, or the server that makes them available, are free of viruses or other harmful elements. All such warranties are expressly disclaimed.

Indemnification

You agree that you will hold harmless the Foundation and its officers, directors, and employees from all claims arising out of or related to your access or use of, or your inability to access or use, the Site or the information contained in the Site or other websites to which it is linked.

Limitation of Liability

To the fullest extent permitted by law, the Foundation, its officers, directors, employees, and affiliates shall not be liable for any direct, indirect, incidental, consequential, special, exemplary, or punitive damages, or for lost profits, revenues, or data, arising from or relating to your use of the Site or any linked site.

Participation in Foundation-sponsored fundraising events is subject to separate event-specific waivers and agreements, which govern liability for those activities.

Opinions and Recommendations

You acknowledge that opinions and recommendations contained in this Site are not necessarily those of the Foundation or endorsed by the Foundation.

Linked Sites and Third-Party Content

These Terms and Conditions apply only to Foundation-operated Sites. The Foundation may provide links within the Site to other websites, platforms, or online services which are not under the control of the Foundation. These links are provided for convenience of reference only and are not intended as an endorsement by the Foundation of the organization or individual operating the site, nor as a warranty of any type regarding the site or the information on it.

Under no circumstances will the Foundation be held liable, directly or indirectly, for any loss or damage that is caused or alleged to have been caused to you in connection with your use of, reliance on, or any content, goods, or services available on any other website or platform to which the Site links. You should direct any concerns to that website’s administrator.

Governing Law and Jurisdiction

This Site (excluding linked sites) is controlled and operated by the Foundation, which is headquartered in the State of California, United States of America. It can be accessed from all 50 states, as well as United States territories and other countries around the world.

By accessing the Site, you agree that any action at law or equity arising from or in any way relating to this Site shall be filed only under the statutes and laws of the State of California, without regard to conflicts of law principles thereof. You also agree and hereby submit to the exclusive personal jurisdiction and venue of the Superior Court of the State of California in and for the County of Los Angeles, and the United States District Court for California with respect to such matters.

The Foundation makes no representation that materials on the Site are appropriate or available for use in other locations, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this Site from other locations do so of their own initiative and are responsible for compliance with local laws.

Copyright and Ownership

As between you and the Celiac Disease Foundation, all right, title, and interest in and to the Site and any and all materials and information on/in the Site, including without limitation the Healthcare Provider Directory design, text and images together with all intellectual property rights embodied therein (collectively, the “Site Materials”), are the property of the Foundation.

The Site and Site Materials are protected by law, including but not limited to U.S. and international copyright law, trademark law, trade secret law, as well as other state, federal, and international laws, regulations, and treaties (collectively, “IP Laws”). The Foundation does not claim any rights in unaltered government data.

Prohibited Uses

You agree not to engage in any activity that would constitute copyright infringement or misappropriation with respect to the Site Materials or Foundation programs, including but not limited to:

• Reproducing, creating derivative works of, distributing, publicly performing, or publicly displaying the Site Materials or any portion thereof without the Foundation’s prior written consent.
• Replicating, imitating, or commercializing any Foundation program, service, research tool, methodology, or event — including but not limited to educational resources, webinars, support tools, advocacy initiatives, fundraising events, research registries, or directories — without the Foundation’s express written permission.
• Compiling mailing lists or other lists of participants, volunteers, or healthcare providers for commercial purposes.
• Establishing independent data files or compendiums of statistical or research information derived from the Site Materials or Foundation programs.
• Using any metatags or hidden text utilizing the name “Celiac Disease Foundation” or “CDF” without our prior written consent.

Medical Disclaimer

IMPORTANT: The contents of the Site, such as text, graphics, images, information, and other material contained on the Site (“Content”) are for informational purposes only.

The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the Site.

The Foundation does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned on the Site. Reliance on any information provided by the Foundation, Foundation employees or volunteers, others appearing on the Site at the invitation of the Foundation, or other visitors to the Site is solely at your own risk.

Healthcare Provider Directory Disclaimer

The Celiac Disease Foundation is not a referral service and does not recommend or endorse any particular healthcare provider or practitioner. Rather, the Foundation is only an intermediary that provides selected information about Healthcare Providers.

We do not offer advice regarding the quality or suitability of any particular Healthcare Provider for specific treatments or health conditions, and no information on this Site should be construed as health or medical advice.

The selected Healthcare Provider information consists of information obtained through primary source verification of state medical license or certification, that submitted by the Healthcare Provider, or other publicly available information. This information is not to be used as a recommendation to utilize the services of any specific healthcare provider or practitioner.

You assume all responsibility in connection with choosing any healthcare provider or practitioner, whether or not you obtained information about such Healthcare Provider on or through this Site.

The Foundation and its licensors, suppliers, and affiliates (collectively, the “Affiliates”), and the directors, officers, agents, and representatives of each, assume no (and hereby disclaim all) responsibility or liability of any kind for any advice, treatment, or other services rendered by any healthcare provider or practitioner, or for any malpractice claims and other claims that may arise directly or indirectly from any such advice, treatment, or other services.

Credential Verification Notice: The use of the Site by any entity or individual to verify the credentials of Healthcare Providers is prohibited. The database of Healthcare Provider information which drives the Site does not contain sufficient information with which to verify Healthcare Provider credentials under the standards of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), National Committee for Quality Assurance (NCQA), or the Utilization Review Accreditation Committee (URAC).

Trademarks and Service Marks

All uses of the Celiac Disease Foundation’s federally registered and common law trademarks, service marks, and trade names must be approved in writing by the Foundation. These include, but are not limited to:

• Celiac Disease Foundation
• CDF
• celiacdotorg
• CDF Team Gluten-Free
• Team Gluten-Free
• Consider Celiac. Request the Test.
• Are You the One?
• Is Your Child the One?
• Is Your Patient the One?
• The Face of Celiac Disease
• iCureCeliac
• NASPGHAN Clinical Guide for Pediatric Celiac Disease
• CDF Clinical Trial Finder
• Eat! Gluten-Free
• Gluten-Free Marketplace
• iQualifyCeliac
• Celiac Disease Foundation Impact Fund
• Celiac Impact Fund

The Foundation also claims rights in additional names, logos, program titles, taglines, campaign slogans, and event names used in connection with its services, whether or not they are expressly listed here. All such marks are the property of the Foundation.

You further acknowledge that other names and logos contained in this Site or in the Site Materials are trademarks and service marks of third parties and may not be used without the permission of the trademark or service mark owner.

Copyright Notice and Permitted Use

The works of authorship contained in the Site, including but not limited to the Site Materials, are owned or licensed by the Foundation and may not be copied, reproduced, transmitted, displayed, performed, distributed, rented, sublicensed, altered, stored by subsequent use, or otherwise used in whole or in part in any manner without our prior written consent.

Unless permitted otherwise in writing, you may only access the Materials located within the Site for your personal use. This means you may download copies of Materials for personal, noncommercial use only, so long as you neither change nor delete any author attribution, trademark, legend, or copyright notice.

When you download Materials, you do not obtain any ownership rights to the Materials.

Hyperlink Policy

You may provide a hypertext link to the Celiac Disease Foundation Site on another website, provided that:

1. The link must be an active, text-only link or approved banner or artwork provided by the Foundation (you may NOT use our logo without prior written approval) clearly marked “Celiac Disease Foundation”
2. The link, when activated by a user, must display this Site full-screen and not within a “frame” on the linked website
3. The appearance, position, and other aspects of the link may not be such as to disparage the Foundation or its services, damage or dilute the goodwill associated with the Celiac Disease Foundation name and service marks, or create the false appearance that an entity other than the Foundation is associated with, benefiting from, or sponsored by the Foundation
4. The link may not be associated with the sale of any products or services, or the promotion of any lottery, raffle, sweepstakes, or other games of chance benefiting the Foundation
5. The link will not appear on pages including content which the Foundation, in its sole discretion, finds to be objectionable, or which includes obscene, pornographic, violent, intolerant, tasteless, denigrating, or sexually-oriented content or materials
6. The Foundation reserves the right to revoke its consent to the link at any time in its sole discretion by amending these Terms and Conditions. You acknowledge and agree that you are responsible for keeping up with any such changes.

All other hypertext links to this Site must be approved in writing by the Foundation. To inquire, please email us at info@celiac.org.

Use of a hypertext link does not indicate or create any endorsement, approval, sponsorship, or affiliation of or with your website by the Foundation. This permission to link is provided without warranties of any kind, express or implied, including without limitation warranties of title or non-infringement.

Contact Information

Thank you for taking the time to review our User Agreement and Terms and Conditions. If you have any questions about these policies or your dealings with this Site, you can contact:

Celiac Disease Foundation
21300 Victory Boulevard, Suite 300
Woodland Hills, CA 91367
Phone: 844. 593.8169, x101
Email: info@celiac.org