Below are AlphaNet’s archived Privacy Polices.

Privacy Police Revised 2016

AlphaNet, Inc.

Patient Information Privacy Policy

We understand that individuals affected by alpha-1 antitrypsin deficiency are concerned about the privacy of information. Therefore, we have established policies and procedures concerning the collection, use and security of the contact and medical information of those we serve. Our Information Privacy Policies are designed to help us preserve our firm commitment to the privacy of the contact and medical information of those we serve while maintaining strict security standards.

Making the Security of Information a Priority

AlphaNet Coordinators have access to information for patients only in their geographic service area. We restrict access to nonpublic personal information about our patients to only those who have a need to know that information in connection with the purposes for which it is collected and used. The patient database is located on a secured, stand-alone computer. Patient information does not reside on AlphaNet’s network server. AlphaNet’s Information Technology Manager maintains the information database. Within AlphaNet, Inc. our employees have been trained to protect your personal information. To that end, we’ve established physical, electronic and procedural safeguards to protect your medical and personal information. Security measures in place are expected to protect against the loss, misuse and alteration of the information under our control.

Collecting Information

We may collect and use information to service your Prolastin supply and maintain quality assurance. The information exchange is primarily with Dohmen Life Science Services an Eversana Company. This information is shared only to the extent necessary to maintain your Prolastin supply and provide you with quality health management services. The type of information that we maintain includes: your name, address, phone number, e-mail address, doctor’s name and contact information, Prolastin dosage, necessary medical supplies and Prolastin shipping records. Should your relationship with AlphaNet, Inc. end, your personal information will remain protected in accordance with our privacy practices outlined in this Policy.

We may collect and use information to service your Zemaira supply and maintain quality assurance. This information is shared only to the extent necessary to maintain your Zemaira supply and provide you with quality health management services. The type of information that we maintain includes: your name, address, phone number, e-mail address, doctor’s name and contact information and Zemaira dosage. Should your relationship with AlphaNet, Inc. end, your personal information will remain protected in accordance with our privacy practices outlined in this Policy.

We may collect and use information to service your Aralast and Glassia supply and maintain quality assurance. This information is shared only to the extent necessary to maintain your Aralast/Glassia supply and provide you with quality health management services. The type of information that we maintain includes: your name, address, phone number, email address, doctor’s name and contact information and Aralast/Glassia dosage. Should your relationship with AlphaNet, Inc. end, your personal information will remain protected in accordance with our privacy practices outlined in this Policy.

There is no demographic or medical information shared between AlphaNet, Inc. and the Alpha-1 Foundation. Grifols, CSL Behring and Shire may receive only aggregated data from AlphaNet, Inc., so that individual records remain confidential.

Making Sure Information is Accurate

Keeping accurate patient records is very important to us. We will promptly update or correct any erroneous information. If you ever find that your information is incomplete, inaccurate or not current, please call or write your AlphaNet Coordinator or our corporate office at:

AlphaNet Privacy Officer
3300 Ponce de Leon Boulevard
Coral Gables, FL 33134
1-800-577-2638 x267

Honoring Your Preferences

You have choices when it comes to learning about new services from AlphaNet, Inc. You can choose not to receive mailings regarding new services by contacting the address or phone number above. You can also choose to “opt-out” of all services provided by AlphaNet by contacting your Coordinator.

Availability of Privacy Policy

This policy may change from time to time, but you can always review our current policy on our web site at: www.alphanet.org or contact us for a copy at: 1-800-577-2638 x267. If there is a substantial change in the Policy, you will receive a copy by mail.

Original effective date May 1, 2001; updated 2004, 2006, 2008, 2013, 2016, 2018.

Privacy Policy 2013 thru 2015

AlphaNet, Inc.

Patient Information Privacy Policy

We understand that individuals affected by alpha1–antitrypsin deficiency are concerned about the privacy of information. Therefore, we have established policies and procedures concerning the collection, use and security of the contact and medical information of those we serve. Our Information Privacy Policies are designed to help us preserve our firm commitment to the privacy of the contact and medical information of those we serve while maintaining strict security standards.

Making the Security of Information a Priority

AlphaNet Coordinators have access to information for patients only in their geographic service area. We restrict access to nonpublic personal information about our patients to only those who have a need to know that information in connection with the purposes for which it is collected and used. The patient database is located on a secured, standalone computer. Patient information does not reside on AlphaNet’s network server. AlphaNet’s Information Technology Manager maintains the information database. Within AlphaNet, Inc. our employees have been trained to protect your personal information. To that end, we’ve established physical, electronic
and procedural safeguards to protect your medical and personal information. Security measures in place are expected to protect against the loss, misuse and alteration of the information under our control.

Collecting Information

We may collect and use information to service your Prolastin supply and maintain quality assurance. The information exchange is primarily with Centric Health Resources. This information is shared only to the extent necessary to maintain your Prolastin supply and provide you with quality health management services. The type of information that we maintain includes: your name, address, phone number, email address, doctor’s name and contact information, Prolastin dosage, necessary medical supplies and Prolastin shipping records.

Should your relationship with AlphaNet, Inc. end, your personal information will remain protected in accordance with our privacy practices outlined in this Policy.
We may collect and use information to service your Zemaira supply and maintain quality assurance. This information is shared only to the extent necessary to maintain your Zemaira supply and provide you with quality health management services. The type of information that we maintain includes: your name, address, phone number, email address, doctor’s name and contact information and Zemaira dosage. Should your relationship with AlphaNet, Inc. end, your personal information will remain protected in accordance with our privacy practices outlined in this Policy.

There is no demographic or medical information shared between AlphaNet, Inc. and either the Alpha-1 Foundation or the Alpha-1 Association.  Talecris Biotherapeutics and CSL Behring may receive only aggregated data from AlphaNet, Inc., so that individual records remain confidential. Making Sure Information is Accurate
Keeping accurate patient records is very important to us. We will promptly update or correct any erroneous information. If you ever find that your information is incomplete, inaccurate or not current, please call or write your AlphaNet Coordinator or our corporate office at:

AlphaNet Privacy Officer
3300 Ponce de Leon Boulevard
Coral Gables, Florida 33134
18005772638

Honoring Your Preferences

You have choices when it comes to learning about new services from AlphaNet, Inc. You can choose not to receive mailings regarding new services by contacting the address or phone number above.  You can also choose to “opt-out” of all services provided by AlphaNet by contacting your Coordinator.

Availability of Privacy Policy

This policy may change from time to time, but you can always review our current policy on our web site at: www.alphanet.org or contact us for a copy at: 1-800-577-2638. If there is a substantial change in the Policy, you will receive a copy by mail.

Original effective date May 1, 2001; updated 2004, 2006, 2008, 2013.

Privacy Policy - 2008-2012

ALPHANET, INC.

PRIVACY POLICY

AlphaNet, Inc. (“AlphaNet”) understands how important the privacy of personal information is to the users of our website. This Privacy Policy applies to the AlphaNet.org website (the “Site”) which includes any sub-sites contained on the Site, including the Big Fat Reference Guide website and the Skinny Little Reference website (collectively, the “BFRG Site”). This Privacy Policy will tell you what information we collect about you and about your use of the Site. It will explain the choices you have about how your personal information is used and how we protect that information.

By using the Site, you consent to the collection and use of your information as set forth in this Privacy Policy and the Site’s Terms of Use as then currently in effect. Any changes to our Privacy Policy or the Terms of Use will be posted on this Site. As a result, please check back periodically to ensure you have the most current Privacy Policy and/or Terms of Use.

The Site contains links to other websites. AlphaNet is not responsible for, nor has it reviewed the privacy practices of such other sites. We encourage you to look for and review the privacy statements of each and every website that you visit through a link on the Site, or otherwise.

This Privacy Policy does not cover email submissions to AlphaNet of content, business information, ideas, concepts or inventions and the like. If you want to keep such content or information private or proprietary, do not send them in an email to AlphaNet.

We hope that reading our Privacy Policy gives you a clear idea of how we manage information about you. While you may use some of the functionality of the Site without registration, many sections of the Site, including the BFRG Site, require registration.

NON-REGISTERED USERS

If you use our website without registering, the only information we collect about you will be non-personal information. We collect this information through the use of cookies, web beacons, or log files. A cookie is a small text file that is stored on your hard drive for record keeping purposes. A web beacon is a small invisible gif file, usually embedded in the website, that helps track the online movements of web users. We also gather information in our log files, as do most web sites. This information includes internet protocol (“IP”) addresses, browser types, referring pages and other information. The information in the log files does not identify individual users.

We use the information collected through cookies, web beacons and log files to understand how our users navigate our Site, and to determine common traffic patterns, including what site the user came from. We may use this information to improve our Site, to make Site navigation recommendations, and to help redesign our Site in order to make your experience on our Site more efficient and enjoyable. You also have choices with respect to cookies. By changing your Internet browser settings, you have the choice to accept all cookies, to be notified when a cookie is set, or to reject all cookies. Refer to your browser’s “help” files for instructions. If you choose to reject all cookies you will be unable to use those services or engage in activities that require the placement of cookies.

NO DISCLOSURE TO LINKED SITES

For your convenience there are links to websites operated by companies other than AlphaNet that are not contractors who provide content or services through the Site. AlphaNet does not endorse and is not responsible for the privacy practices of these sites. If you choose to link to one of these third-party websites, you should review the privacy policy posted on such website to understand how such website collects and uses your personal information.

HOW ALPHANET HANDLES PRIVACY AND SECURITY INTERNALLY

Listed below are some of the security procedures that AlphaNet uses to protect your privacy. AlphaNet:

  • Uses firewalls to protect information held in our servers.
  • Utilizes Secure Socket Layer (SSL) encryption technology in transmitting personal information to our servers. In order to take advantage of encryption technology, you must have an Internet browser which supports 128-bit encryption. The SSL protocol provides server authentication, data integrity, and privacy on the Web. SSL encrypts your personal information as it is being transmitted and also verifies the identity of the server and that the original message arrives safely at its destination. However, no data transmission over the Internet can be guaranteed to be 100% secure. As a result, while we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us or from this Site, and therefore you use this Site at your own risk.
  • Requires all AlphaNet employees to abide by our Privacy Policy and be subject to disciplinary action if they violate it.

INFORMATION FROM MINORS

This Site is intended for use only by persons who have reached the age of majority under the law of the jurisdiction in which they are domiciled. AlphaNet does not seek to collect information about minors. No information should be submitted to or posted on this Site by minors. If a minor submits personal information to this Site, we will delete the information as soon as we discover it and will not use it for any other purpose.

CHANGES TO THIS PRIVACY POLICY

We reserve the right to change this Privacy Policy at any time. The new Privacy Policy will be posted on this Site. Your continued use of the Site will indicate acceptance of the changes to our Privacy Policy. Please exit this Site immediately if you do not agree to the terms of this Privacy Policy or any revised Privacy Policy.

THE FOLLOWING SECTIONS ONLY APPLIES TO REGISTERED USERS OF THE BFRG SITE

If you choose to register with our website for full access to the BFRG Site, we require you to submit Personally Identifiable Information, as defined below. You are responsible for ensuring the accuracy of the Personally Identifiable Information you submit to AlphaNet. Inaccurate information will affect the information you receive when using the BFRG Site and our ability to contact you as contemplated in this Privacy Policy. For example, your email address should be kept current because that it is how we communicate with you. “Personally Identifiable Information” is information about a natural person that identifies a specific individual, including, but not limited to, his or her name, title, company, physical and electronic addresses, and telephone and fax numbers. A domain name or IP address is not considered Personally Identifiable Information.

PERSONALLY IDENTIFIABLE INFORMATION WE COLLECT ABOUT YOU

We collect Personally Identifiable Information that you provide to us when you register for access to the Site and/or when you update your member profile. We use the Personally Identifiable Information that you provide to respond to your questions and to send you emails about website maintenance and updates.

USE FOR MARKETING PURPOSES

AlphaNet may also use your Personally Identifiable Information to send you, via regular or electronic mail, special offers and product information (collectively, “Product Information”) that may be of unique interest to you as an Alpha or someone involved with the care of an Alpha. Any such offers will only be sent to you by AlphaNet and at no time will AlphaNet disclose your Personally Identifiable Information to a third party, except as provided below. If you do not wish to receive Product Information, you may simply deselect the appropriate box on the registration page. If you are already a registered user of the BFRG Site, click “here”:mailto:administrator@alphanet.org to send us an email informing us that you no longer wish to receive Product Information or click on the unsubscribe link at the bottom of any Product Information we send you.

DISCLOSURE OF YOUR INFORMATION

Except as set forth in this Privacy Policy or as specifically agreed to by you, AlphaNet will not disclose any Personally Identifiable Information it gathers from you. We reserve the right to disclose or report Personally Identifiable Information in limited circumstances where we believe in good faith that disclosure is required under law, to cooperate with regulators or law enforcement authorities, and to protect our rights or property.

DISCLOSURE TO ALPHANET MAINTENANCE CONTRACTORS

AlphaNet operations and maintenance contractors sometimes have limited access to your Personally Identifiable Information in the course of providing services to AlphaNet. These contractors include vendors and suppliers that provide us with technology, services, and/or content related to better operation and maintenance of the Site. Access to your Personally Identifiable Information by these contractors is limited to the information reasonably necessary for the contractor to perform its limited function for AlphaNet. We also contractually require that our operations and maintenance contractors 1) protect the privacy of your Personally Identifiable Information consistent with this Privacy Policy, and 2) not use or disclose your Personally Identifiable Information for any purpose other than providing us with products and services.

NO DISCLOSURE TO LINKED SITES

AlphaNet does not disclose your Personally Identifiable Information to these third party websites.

HOW ALPHANET HANDLES PRIVACY AND SECURITY INTERNALLY

In addition to the security procedures listed above, below are some of the additional security procedures that AlphaNet uses to protect your Personally Identifiable Information:

  • Requires both a personal username and a password in order for users to access their Personally Identifiable Information.
  • Closely monitors the limited number of AlphaNet employees who have potential access to your Personally Identifiable Information.
  • Regular back-ups of our systems are performed to protect the integrity of your Personally Identifiable Information.
  • Limits access to Personally Identifiable Information to authorized users.

Despite AlphaNet’s efforts to protect your Personally Identifiable Information, there is always some risk that an unauthorized third-party may breach our security systems or that transmissions of your information over the Internet will be intercepted.

UPDATING YOUR PERSONALLY IDENTIFIABLE INFORMATION

AlphaNet has tools that collect and store self-reported data. These tools allow you to correct, update or review information you have submitted, including Personally Identifiable Information, by logging in our website, going back to the specific tool you utilized and making the desired changes.

DELETION OF PERSONALLY IDENTIFIABLE INFORMATION

Upon your request, we will delete your Personally Identifiable Information from our active databases and, where feasible, from our back-up media. You should be aware that it is not feasible to remove from our servers each and every record of the information you have provided to AlphaNet.

CHANGES TO THIS PRIVACY POLICY

If any change to this Privacy Policy affects Personally Identifiable Information, we will also send an email to you at the email address you provided when you registered.

Original effective date May 1, 2001; updated 2004, 2006, 2008, 2013

Privacy Policy - 2001-2008

AlphaNet, Inc.

Patient Information Privacy Policy

We understand that individuals affected by alpha1–antitrypsin deficiency are concerned about the privacy of information. Therefore, we have established policies and procedures concerning the collection, use and security of the contact and medical information of those we serve. Our Information Privacy Policies are designed to help us preserve our firm commitment to the privacy of the contact and medical information of those we serve while maintaining strict security standards.

Making the Security of Information a Priority

AlphaNet Coordinators have access to information for patients only in their geographic service area.  We restrict access to nonpublic personal information about our patients to only those who have a need to know that information in connection with the purposes for which it is collected and used.  The patient database is located on a secured, stand-alone computer.  Patient information does not reside on AlphaNet’s network server.  AlphaNet’s Information Manager maintains the information database.  Within AlphaNet, Inc. our employees have been trained to protect your personal information.  To that end, we’ve established physical, electronic and procedural safeguards to protect your medical and personal information.  Security measures in place are expected to protect against the loss, misuse and alteration of the information under our control.

Collecting Information

We collect and use information to service your Prolastin® supply and maintain quality assurance.  The information exchange is primarily with Specialty Distribution Systems division of Express Scripts, Inc. This information is shared only to the extent necessary to maintain your Prolastin supply and provide you with quality services.  The type of information that we maintain includes:  your name, address, phone number, e-mail address, doctor’s name and contact information, Prolastin dosage, necessary medical supplies and Prolastin shipping records.  Should your relationship with AlphaNet, Inc. end, your personal information will remain protected in accordance with our privacy practices outlined in this Policy.

There is no demographic or medical information shared between AlphaNet, Inc. and either the Alpha One Foundation or the Alpha 1 Association.  Bayer Corporation may receive only aggregated data from AlphaNet, Inc., so that individual records remain confidential.

Making Sure Information is Accurate

Keeping accurate patient records is very important to us.  We will promptly update or correct any erroneous information.  If you ever find that your information is incomplete, inaccurate or not current, please call or write your AlphaNet Coordinator or our corporate office at:

2937 SW 27th Avenue
Suite 305
Coconut Grove, FL  33133
1-800-577-2638

Honoring Your Preferences

You have choices when it comes to learning about new services from AlphaNet, Inc.  You can choose not to receive mailings regarding new services by contacting the address or phone number above.  You can also choose to “opt-out” of all services provided by AlphaNet by contacting your Coordinator.

Availability of Privacy Policy

This policy may change from time to time, but you can always review our current policy on our web site at:  www.alphanet.org or contact us for a copy at:  1-800-577-2638.  If there is a substantial change in the Policy, you will receive a copy by mail.

Effective date:  May 1, 2001