Privacy Policy

Last Updated March 8, 2020

The website is hosted and managed by the International FPIES Association ( The International FPIES Association is committed to safeguarding your privacy and personal data. As a nonprofit organization, the Association operates to advance research of Food Protein-Induced Enterocolitis Syndrome (FPIES). The Association uses the donations it receives to fund scientific research in furtherance of that goal. The Association also offers digital and non-digital tools for patients, families, donors and researchers to access information on FPIES and to engage with the FPIES community.

This Privacy Policy explains our online information practices and outlines the choices you can make about what information you provide, how your data is collected and how it is used. From time to time, the Association conducts internal audits of its information practices and reserves the right to make changes to this policy.  Changes to this policy are also made to comply with evolving legal and regulatory requirements, including the General Data Protection Regulation (GDPR) of the European Union.

This Privacy Policy applies to all information received by the Association, both online and offline, any electronic, written or oral communication you share with us, and any information you provide to third-party vendors operating on behalf of the Association. 

What Data We Collect

The Association collects several types of information about you, depending on the action you take. This data includes personal information that you directly submit to us as part of a registration, participation, survey or donation form, as well as through other digital and non-digital interfaces and platforms, such as e-mail and social media. The Association also collects information on your web behaviors as you navigate through this website through the use of cookies and other tracking technologies.  The data collected by the Association generally falls into 3 categories:

  • Personal information, including name, email address, mailing address and connection to FPIES (e.g., patient/caregiver or healthcare provider)
  • Platform data, including your IP address, browsing actions and traffic patterns, which is automatically collected through cookies and other tracking technologies as you navigate our website. Our website and other digital platforms also include third-party features and widgets that may collect data.
  • Transactional data, including personal and credit card information, through donations submitted on our financial transaction pages. This information is used to acknowledge receipt of your donation for tax purposes and to include you on the Association’s mailing list, if you choose to join it.

How We Use Your Data

The Association and its third-party vendors may use your personal, platform or transactional data to:

  • Provide you with relevant information about our programs and services
  • Carry out a request or transaction you have initiated
  • Analyze trends in user behavior
  • Optimize the performance of the website
  • Tailor and promote opportunities for engagement to meet your interests
  • Improve the technical performance and personalized experience of our website
  • For any other purposes with your consent

The Association does not sell or rent your information to others.

Your information may also be disclosed to comply with a court order, law or legal process.

If you wish, you can modify your internet browser settings to alter which technologies are permitted, but this may limit some functionalities and features of our website.  

Data Security

We care about the security of your transactions and the data you share on our website. The Association applies industry-standard practices and technologies to safeguard your personal and credit card information. We use high-grade encryption and the secure https protocol to communicate with your browser, which guards against interception of the credit card information when making a financial transaction such as a donation. We also employ several different security techniques to protect your personally identifiable information from unauthorized access by users inside and outside the organization.

The web servers for the Association are located in a locked, secure environment, and computer systems are maintained in accordance with industry standards to secure information. You should be aware, however, that “perfect security” does not exist on the Internet, and third parties may unlawfully intercept or access transmissions or private communications.

Consistent with regulations of the United States and European Union, the Association takes many technical precautions to keep your data and privacy secure against security breaches. However, there is no guarantee that your information is completely safe from breach of our computer systems and servers. In the event of a breach, the Association will comply with its regulatory obligations.

Children’s Privacy

None of the content and information on the Association’s website is targeted toward children under 13 years of age. We make every effort possible to ensure that we do not collect or maintain information on our website from those we know to be younger than 16 unless parental consent has been obtained in writing.

Communication Preferences

The Association provides an online option to join our communications list. If you have “opted-in” to receive communications, we may send you regular communications, either via e-mail or regular mail.

You will be added to Association’s email list only if you register to receive emails via a member registration form on the FPIES University website. Email subscribers may select their preferred content streams, or unsubscribe from all email communications, by visiting their “Edit Profile” link or unsubscribing at the bottom of all Association emails. You can also correct or change the personal information you have provided by contacting us at

To protect your privacy and security and the identity of the Association’s donors and community members, we will take certain steps to verify your identity before granting access to your information or making corrections. You will be asked specific questions, including full name, address, phone number, and, if applicable, credit card numbers and/or expiration date. 

Contact Us

If you have specific questions or concerns about this Privacy Policy, or if you would like access to the personal information you have provided the Association, please contact us at or at the following address.

The International FPIES Association

330 River Avenue

Point Pleasant Beach, NJ 08742

Links to Other Websites

The Association’s site includes links, some temporary and some permanent, to other websites. We are not responsible for the privacy and security practices of any other website or the nature of the content contained therein.