AlphaNet, Inc. Privacy Notice and Cookie Policy

PRIVACY NOTICE

Last Revised: April 14, 2026

AlphaNet, Inc. (referred to as “AlphaNet”, “it”, “we”, “us” or “our”) respects the privacy of our supporters, including subscribers, members of AlphaNet mailing lists, program participants, or visitors to alphanet.org, bfrg.alphanet.org, professional.alphanet.org, subscriber.alphanet.org, or alpha1alleles.com (the “Websites”). Therefore, we have established this Privacy Notice (“Notice”) to help you better understand how we collect, use, store, disclose, and protect your Personal Data. This Notice does not apply to workforce-related Personal Data collected from employees or similar individuals (e.g., contractors or temporary employees).

For purposes of this Notice, “Personal Data” means any information relating to an identified or identifiable natural person. “Sensitive Data” includes information regarding an individual’s racial or ethnic origin, religious or philosophical beliefs, trade union membership, or data concerning physical or mental health, genetic or biometric data, or sexuality.

This Notice applies to Personal Data received by AlphaNet in any way, including through our Websites.

This Notice does not apply to any user activity on any third-party websites, plug-ins or applications that may link to or be accessible from our Websites. Clicking on those links or enabling those connections may allow third parties to collect or share data about you. We do not control these third-party websites and are not responsible for their privacy statements, even if our name or logo appears on such websites. When you leave our Websites, we encourage you to read the privacy policy or notice of every website you visit.

This Notice covers:

  • Who We Are And How To Contact Us
  • Personal Data We Collect And How We Obtain It
  • How We Use Your Personal Data
  • Managing Your Marketing Preferences
  • Disclosures And Transfers Of Your Personal Data
  • Security Of Your Personal Data
  • Retention Of Your Personal Data
  • Data Subject Rights
  • Children’s Privacy
  • Changes To This Notice
  • Do Not Track And Other Similar Technologies
  • Cookie Policy

WHO WE ARE AND HOW TO CONTACT US

AlphaNet is committed to providing resources to those diagnosed with Alpha-1 and funding research to find a cure. We are incorporated in Florida as a not-for-profit health-management corporation and are registered with the IRS as a 501(c)(3) charitable organization.

With respect to the Personal Data collected by AlphaNet, AlphaNet is generally a controller for purposes of the General Data Protection Regulation (“GDPR”) and similar privacy laws. A “Controller” is a person or organization who alone or jointly determines the purposes for which, and the manner in which, any Personal Data is processed.

If you have questions about this Notice, please contact the AlphaNet Privacy Officer at:

AlphaNet Privacy Officer
3300 Ponce de Leon Boulevard
Coral Gables, Florida 33134
1 (800) 577-2638

Or contact us via email at: privacy@alphanet.org

PERSONAL DATA WE COLLECT AND HOW WE OBTAIN IT

We may collect the following types of Personal Data from you in the following ways:

When Voluntarily Submitted

AlphaNet collects Personal Data that you voluntarily provide to us through your decision to create an account, become an AlphaNet Subscriber, participate in our Alpha-1 Disease Management and Prevention Program, our REACH program, or our Continuing Nursing Education Program. The Personal Data we collect from you may include your first and last name, date of birth, gender, phone number(s), email address, physical and/or mailing address, country of residence, information regarding your marketing preferences, your username and password, and an answer to a secret question for security purposes, which may reveal Personal Data.

We also collect some Sensitive Data related to your health when you create an account with us. For example, we may ask you for your Alpha-1 status.

When you become an AlphaNet subscriber, participate in our Alpha-1 Disease Management and Prevention Program, or participate in our REACH Program, you are assigned an Alpha-1 Coordinator based on your geographic location. Alpha-1 Coordinators provide a range of services, which may include but are not limited to things such as general support, education and assistance with augmentation therapy infusion issues and supplies, and information on research studies. For example, the Personal Data we may collect from you and disclose to your Alpha-1 Coordinator includes your doctor’s name and contact information and your prescription information in order to service your Aralast, Glassia, Prolastin, or Zemaira supply and to maintain quality assurance. Your decision to use this service and provide us with this information is completely voluntary.

We may also collect the above categories of Personal Data from your specialty pharmacy provider when you participate in our Alpha-1 Disease Management and Prevention Program.

The decision not to provide us with certain Personal Data may limit your ability to use some of the functions on our Websites, including to create an account, register for programs and events, participate in the Continuing Nursing Education Program, or participate in certain activities such as to sign up for a newsletter or apply for a job/volunteer position.

We will not ask you for Sensitive Data unless it is necessary to provide you with the services you have signed up for. You should not provide Sensitive Data to us unless we specifically request it.

Collected Automatically

When you visit and navigate through our Websites, some data that is considered Personal Data is automatically collected. This includes the following:

Internet Protocol (IP) address: When you visit our Website, we may view the IP address of the device you use to connect to the Internet.

Tracking Technologies: AlphaNet uses cookies and other tracking technologies set by third parties, including Google Analytics, to collect information about you for various purposes, including how visitors use our Websites. To learn more about our use of cookies and how to control your cookie preferences, please refer to our Cookie Policy below.

HOW WE USE YOUR PERSONAL DATA

We may use your Personal Data for the purposes listed below. We have identified the legal basis for each specified use:

Purpose for Collection Legal Basis for Processing
To allow us to deliver the type of content and services that you request Based on your consent, which you may revoke at any time
To allow us to send you crucial information such as information related to emergency preparedness and what to do in the event of natural disaster Necessary for your or another data subject’s vital interests
To assign you an AlphaNet Coordinator Based on your consent, which you may revoke at any time
To provide your AlphaNet Coordinator with your name and contact information, in order for the Coordinator to contact you Based on your consent, which you may revoke at any time
To provide your AlphaNet Coordinator with certain Personal Data in order to provide health management services such as your Alpha-1 diagnosis, your doctor’s name and contact information, your insurance information, and your prescription information in order to assist where possible with facilitating the delivery of your infusion and infusion supplies of Aralast, Glassia, Prolastin, or Zemaira and to maintain quality assurance Based on your explicit consent, which you may revoke at any time
To send you important information regarding our relationship with you, including information about our Websites, changes to this Notice, our terms, conditions, and policies, and other administrative information Necessary for our legitimate interests in order to run our business; Necessary for the performance of a contract with you; Necessary to comply with a legal obligation
To provide you with informational and marketing materials related to AlphaNet’s news, events, and services Based on your consent, which you may revoke at any time
To comply with applicable law, court orders, subpoenas, dispute resolution processes, or legal processes served on us Necessary to comply with legal obligations
To defend any legal action or threatened legal action without consideration for whether such legal action or threatened legal action is eventually determined to be with or without merit Necessary for our legitimate interest in defending against a legal action
For those participating in AlphaNet’s Continuing Nursing Education Programs, available only to U.S. registered nurses, to register you for the course and document and verify your completion as required by the accrediting agency Necessary for the performance of a contract with you

 

We will only use your Personal Data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose.

MANAGING YOUR MARKETING PREFERENCES

Periodically, we may send you marketing information to let you know about new services from AlphaNet. At any time, you may withdraw your consent to be contacted for marketing purposes by (1) adjusting your marketing preferences in your profile, (2) following the opt-out instructions on any marketing message sent to you, or (3) contacting us at any time via phone at (800) 577-2638.

DISCLOSURES AND TRANSFERS OF YOUR PERSONAL DATA

We may share your Personal Data with our AlphaNet Coordinators in order to provide the services you ask us to provide. AlphaNet Coordinators can only access Personal Data for their assigned subscribers. AlphaNet Coordinators may also access the Personal Data for subscribers assigned to another Coordinator when that Coordinator is temporarily unavailable due to circumstances such as sick leave or vacation. In such a case, the Coordinator temporarily assigned to a subscriber will have access to the subscriber’s Personal Data only for the duration of the temporary assignment.

We may share your Personal Data with certain service providers in order to service your Prolastin supply and maintain quality assurance.

We may also share your Personal Data with certain third parties to comply with legal requests where disclosure is required or permitted by law, regulatory requirements, tax, accounting or reporting requirements such as, for example, to provide documentation on funding sources in connection with a review or audit of our compliance with 26 U.S.C. § 501(c)(3).

We do not share Personal Data between AlphaNet, Inc. and any of our partners at the Alpha-1 Foundation, Grifols, CSL Behring, and Takeda.

SECURITY OF YOUR PERSONAL DATA

We implement technical and organizational measures designed to assist in maintaining the security and confidentiality of Personal Data; safeguarding against anticipated threats to the confidentiality, integrity, and availability of Personal Data; and protecting Personal Data against accidental or unlawful destruction, loss, alteration, and unauthorized access or disclosure.

Note that because the transmission of data over the Internet is not completely secure, we cannot guarantee that your Personal Data is secure when you transmit information to us and you acknowledge that you make such transfers at your own risk.

RETENTION OF YOUR PERSONAL DATA

We will retain your Personal Information for the time period necessary to fulfill the purposes for which your Personal Information was originally collected or received and to meet our legal or regulatory obligations.

DATA SUBJECT RIGHTS

Individuals residing in the EEA/UK are afforded special rights pursuant to the GDPR/UK GDPR. The rights are as follows:

  • The right to access data – We will determine whether we are processing any of your Personal Data and if so, provide you a copy of that information.
  • Right to correct inaccurate data – If you find that the Personal Data we are processing about you is incorrect, please let us know how it should be corrected. To the extent we have shared your Personal Data, we will take steps to inform recipients of the correction unless it is impossible or involves a disproportionate effort. If applicable, and upon your request, we will also tell you with whom we have shared your Personal Data so you may contact them directly.
  • Right to delete information – In some limited circumstances, you can ask us to delete the Personal Data we store about you. To the extent we have shared your Personal Data, we will take steps to inform recipients of your request when it is possible. If applicable, and upon your request, we will also tell you with whom we have shared your Personal Data so you may contact them directly.
  • Right to data portability – When you have provided Personal Data directly to us, and we process that information on the basis of consent or the performance of a contract, you have the right to receive the Personal Data you have provided to us in a structured, commonly used, and machine readable format. Where it is technically feasible and subject to the same limitations, you have the right to request that your data be transmitted to another controller.
  • Right to object – You have the absolute right to object to our processing of your Personal Data for marketing purposes. You also have a right to object to our processing of your Personal Data if that processing is based on legitimate interest grounds, unless we can demonstrate compelling grounds to continue processing or if we need to continue processing for the establishment, exercise or defense of a legal claim.
  • Right to restrict processing – You have the right to restrict the processing of your Personal Data in some circumstances such as while we are verifying the accuracy of your Personal Data when you have contested it, while we are determining whether we have compelling grounds to continue processing after you have made an objection pursuant to your right to object, or where your information has been processed unlawfully, but you do not want your information to be deleted. Your right to restrict processing will not affect our ability to store your Personal Data.
  • Right to withdraw consent – If we rely on your consent as our basis for processing your Personal Data, you have the right to withdraw your consent at any time.
  • Right to lodge a complaint with a supervisory authority – You have the right to lodge a complaint with the supervisory authority located in the Member State that is the location of your habitual residence, place of work, or place of the alleged infringement.

If you reside outside of the EEA/UK, you may have privacy rights under law(s) applicable to your Personal Data. Please reach out to us if you have any questions about Personal Data rights using the contact information provided in the Who We Are and How to Contact Us section.

Note that AlphaNet does not engage in automated individual decision-making and profiling.

If you would like to submit a request in accordance with the rights above, please contact us via email at privacy@alphanet.org or via phone at (800) 577-2638.

You may also mail request submissions to:

AlphaNet, Inc.
3300 Ponce de Leon Boulevard
Coral Gables, Florida 33134

CHILDREN’S PRIVACY

Our Websites are not intended for use by persons under the age of 18. Children under 18 are not authorized to become an AlphaNet subscriber, sign up for an event or program, or otherwise provide any Personal Data without consent from a parent or legal guardian. We do not knowingly collect information from individuals in this age group without the requisite consent. We reserve the right to delete any information identified as having been improperly provided by persons under the age of 18 at our discretion.

CHANGES TO THIS NOTICE

We may make changes to this Notice from time to time. It is our policy to post any changes we make to our Notice on our Website. Our most current Notice will appear on this page. If we make material changes to this Notice, we notify you via email or through a prominent notice on the homepage of our Website.

DO NOT TRACK AND OTHER SIMILAR TECHNOLOGIES

We will support Do Not Track (“DNT”) and other similar technologies. Do Not Track is a preference you can set in your web browser to inform websites that you do not want to be tracked.

You can enable or disable Do Not Track and other similar technologies by visiting the Preferences or Settings page of your web browser.

COOKIE POLICY

As you interact with our Websites, we, with assistance from third-party analytics service providers such as Google Analytics, collect Personal Data pertaining to your use of our Website and the devices and programs from which you access our Website (“Usage Data“) using cookies and similar technologies.

  1. What are Cookies and Other Similar Technologies? Cookies are small computer files sent or accessed from your browser on the hard drive of your computer, mobile device, or tablet that contain information about your device, such as your user ID, user settings, browsing history, and activities conducted while browsing websites.
  2. How do We Use Cookies and Other Similar Technologies? Cookies are essential for the effective operation of our Websites and help you to navigate our Websites.

The primary purposes for which cookies are used are: (1) For the effective operation of our Websites, especially in connection with Website navigation and online communications; (2) To monitor and improve the quality and user-friendliness of our Websites; (3) To monitor the success of our advertising campaigns and marketing-related activities and to conduct additional advertising campaigns and marketing-related activities; and (4) To assist AlphaNet in detecting and preventing fraud, denial of services attacks, and other malicious activity directed at our Websites.

For example, Google Analytics collects Usage Data such as how many unique visitors navigate to our Websites, what pages visitors view, the countries from which our Websites are accessed, bounce rates (the percentage of visitors who leave the Websites after only viewing one page), how visitors access our Websites (e.g., by directly typing in a URL or through a search method), and the average time that visitors spend on our Websites.

  1. How Can You Manage Cookies and Other Similar Technologies? If you do not want Usage Data collected through the use of cookies and other similar technologies, there is a procedure in most browsers that allows you to automatically decline many of these technologies, or to be given the choice of declining or accepting them. Cookies that are required to enable core site functionality cannot be disabled without causing substantial website functionality issues. To assist in controlling website or application-specific cookies, check the privacy and cookie setting in your preferred browser.

We neither have access to, nor does this Notice govern, the use of cookies and similar technologies that may be placed on your device by third parties when you access our websites.

Google’s ability to use and share information is governed by its customer’s authorization or as otherwise expressly permitted under the Google Analytics Terms of Use (https://www.google.com/analytics/terms/us.html) and the Google Privacy Policy (https://policies.google.com/privacy). We encourage you to view and read these Google policies.

Original effective date May 1, 2001; last updated April 14, 2026.