To view our archived Privacy Policies, click here.
At AlphaNet, Inc. (referred to as “AlphaNet”, “it”, “we”, “us” or “our”) we are committed to the lawful, fair, and transparent collection and use of your personal data. We respect the privacy of our supporters, including subscribers, members of AlphaNet mailing lists, program participants, or visitors to alphanet.org, alphanetbfrg.org, or alphanetprofessionaled.org (the “Websites”). Therefore, we have established this Privacy Notice (“Notice”) to help you understand how we collect, use, store, share, and protect your personal data.
Who we are and how to contact us
When this Notice applies
The personal data we collect about you and how it is collected
How we use your personal data
Managing your marketing preferences
Disclosures and transfers of your personal data
The security of your personal data
How you can access and control your data (for individuals residing in the EEA)
Information about minors
Do Not Track Signals
Changes to this Notice and your duty to information of us of changes
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 a controller for purposes of the General Data Protection Regulation (“GDPR”).
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 x267
This Notice applies to personal data received by AlphaNet both online and offline, including through our Websites, deep links associated with our Websites, as well as any electronic, written, or oral communications.
We collect the following information 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. This 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.
The decision not to provide us with certain personal data may limit your ability to use some of the functions on our Websites, including the ability 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 also collect some sensitive data related to your health when you create an account with us. Specifically, we will ask you for your Alpha-1 status.
We collect this information in order to provide you with the best and most tailored services possible.
When you become an AlphaNet subscriber, participate in our Alpha-1 Disease Management and Prevention Program, or our REACH Program, you are assigned an Alpha-1 Coordinator based on your geographic location (currently limited to the United States). 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. Your Alpha-1 Coordinator will not ask you for sensitive data unless it is necessary to provide a one of our services. For example, we may collect 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 will not ask you for sensitive data unless it necessary to provide you with the services you have signed up for and you should not provide sensitive data to us unless we specifically request it.
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 Site, we may view the IP address of the device you use to connect to the Internet. We use this information to determine the general physical location of the device and understand from what geographic regions our website visitors come. We also may use this information to enhance our Site.
We may use your personal data for the purposes listed below. For purposes of the GDPR, we have also identified our legal basis for each specified use where applicable:
Change of purpose
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. If you would like an explanation as to how the processing for the new purpose is compatible with the original purpose, please contact us at email@example.com.
If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.
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) by following the opt-out instructions on any marketing message sent to you, or (3) by contacting us at any time.
We share your personal data with our AlphaNet Coordinators in order to provide the services you ask us to provide. AlphaNet Coordinators can only access the personal data for their assigned subscribers. AlphaNet Coordinators may also access the person 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. Specifically, this exchange is with Eversana.
We may also share your personal data 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 U.S.C. Sec. 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 Shire. However, we may share anonymous data with third parties, which removes such data from the scope of data protections laws.
Our employees have been trained to protect your personal data. To that end, we've established physical, technical, and procedural safeguards to protect your personal data. Security measures in place are expected to protect against the loss, misuse and alteration of the information under our control. In addition, we limit access to your personal data to those AlphaNet Coordinators and other third parties who have a business need to know. They will only process your personal data on our instructions.
Note that because the transmission of data over the Internet is not completely secure, we cannot guarantee that your data is secure when you transmit information to us through our Websites and you acknowledge that you make such transfers at your own risk.
We will only retain your personal data for as long as reasonably necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, regulatory, 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 U.S.C. Sec. 501(c)(3).
We may retain your personal data for a longer period in the event of a complaint or if we reasonably believe there is a prospect of litigation in respect to our relationship with you.
When it is no longer reasonably necessary to retain your personal data, we will either delete or anonymize your personal data or, if this is not possible, we will securely store your personal data and isolate it from any further use until deletion is possible. We may dispose of any data in our discretion without notice, subject to applicable law.
To determine the appropriate retention period for personal data, we consider the amount, nature and sensitivity of the personal data, the potential risk of harm from unauthorized use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal, regulatory, tax, accounting or other requirements.
Individuals residing in the EEA are afforded special rights pursuant to the GDPR. The rights are as follows:
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 at firstname.lastname@example.org.
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.
We may make changes to this Notice from time to time. Our most current Notice will appear on this page and our archived versions can be found here. If we make material changes to this Notice, we notify you via email using the most recent email address we have on file for you. If you do not agree to changes that we may make, please do not continue to provide us with any personal data.
It is important that the personal data we hold about you is accurate, current, and complete. You represent and warrant to us that all information you provide to us is accurate and complete, so it is important that keep us informed if your personal data changes during your relationship with us.
We do not support Do Not Track (“DNT”). Do Not Track is a preference you can set in your web browser to inform websites that you do not want to be tracked.
Your Cookie Preferences You have choices when it comes to cookies. You can decide whether to allow cookies by toggling the cookie settings in your browser. You can also opt out of Google Analytics cookies. For specific information about how to do so, please visit https://tools.google.com/dlpage/gaoptout.
Note that if you disable cookies in your browser settings, some functionalities of our Websites may be limited.
You can learn how to access and control these settings through the “Help” feature of your specific browser(s). You may also visit www.aboutcookies.org, which is a helpful resource for learning to access and control cookie settings for a variety of different browsers. You will also find information about how to delete cookies, FAQs, and other general cookie information.
Controller is the person or organization who alone or jointly determines the purposes for which, and the manner in which, any personal data is, or is likely to be, processed.
Deep Link means a hyperlink that links to specific content on a website other than the website’s home page. For example, https://www.alphanet.org/who-is-alphanet/ rather than https://www.alphanet.org.
IP Address stands for Internet Protocol address and is an identifying number that is associated with a specific computer or computer network.
Personal Data means any information about an individual from which that persona can be identified. It does not include data where the identity has been removed (anonymous data).
Comply with a legal obligation means processing your personal data where it is necessary for compliance with a legal obligation that we are subject to.
Legitimate Interest means the interest of our business in conducting and managing our business to enable us to give you the best service and the best and most secure experience. We make sure we consider and balance any potential impact against you (both positive and negative) and your rights. We do not use your personal data for activities where our interests are overridden by the impact on you (unless we have your consent or are otherwise required or permitted to by law). You can obtain further information about how we assess our legitimate interests against any potential impact on you in respect of specific activities by contacting us.
Performance of Contract means processing your data where it is necessary for the performance of a contract to which you are a party or to take steps at your request before entering into such a contract.
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.
Original effective date May 1, 2001; updated 2004, 2006, 2008, 2016, 2018, 2019.