Privacy Policy

Our Commitment to Data Security

To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we have put in place appropriate physical, electronic, and managerial procedures to safeguard and secure the information we collect online.

We process your financial transactions securely using the Payment Card Industry Data Security Standard (“PCI DSS”) (the credit card industry’s most stringent security standard). Examples of our security measures include: physical, electronic, and procedural safeguards; sophisticated security monitoring tools; documented security policies; use of strong encryption (e.g., SSL) for transmissions of Order Information to and from our credit card processor; restricted access of personally identifiable information; and, periodic security audits.

Inside PHA, data is stored in password-controlled servers. Our staff is trained on a regular basis and educated about the importance of safeguarding your information. We are committed to holding them accountable for protecting your confidentiality. However, such precautions do not guarantee that our website is invulnerable to all security breaches. PHA makes no warranty, guarantee, or representation that our website is protected from viruses, security threats, or other vulnerabilities and that your information will always be secure.

The information we collect on this website is used to improve the navigation and/or content of our website and to notify you about updates to this website as requested. This information is maintained in a retrievable format and may be amended by contacting Webmaster@PHAssociation.org.

If you would like to request access to review, update or change in any way the information you have supplied, you may do so by sending an email to Webmaster@PHAssociation.org. You can correct factual errors in your personally identifiable information by sending us a request that credibly shows the error. We use this procedure to better safeguard your information. To protect your privacy and security, we will also take steps to verify your identity before granting access or making corrections.

Chat Rooms, Discussion Boards, Email Groups

You should remember that other members, patients, and third parties participating in PHA chat rooms, discussion boards, email groups and other online public discussions are not controlled by PHA. While we may monitor these public forums to control inappropriate content from being posted, we cannot control the privacy of information divulged by you in these forums. If you choose to reveal personal, contact, or medical information in these public forums, you do so at your own risk.

Site Registration

Information provided during site registration is only used to provide you with targeted content and allow you to access special features, such as updating your contact information.

Profile Updates & Directories

Profile updates to your contact information will only be used for internal purposes unless you have opted into a directory. We will only make your information available in a directory if you have opted in. When opting in to a directory, please take special note of what information will be made available in the directory and to whom. Examples of directories are the Find a Doctor directory, which is open to the public, and the PH Professional Network (formerly PH Resource Network) Member Directory, which is available to current PHPN members only.

Links to Other Sites

We may also provide links to other sites that we believe might be useful or educational for you. Please note that we are not responsible for the privacy policies or actions of those third parties operating these linked web sites. We suggest that you access the online privacy policies of these web sites or contact the relevant parties concerning their data collection policies

Support Group Sites

Support group websites are maintained by support group leaders. If you become an online member of a support group, your support group leader will have access to your information and will be able to send you periodic email communications, unless you've unsubscribed.

Surveys

You may be asked to participate in occasional online surveys. Your participation in these surveys is appreciated, and no information of a personal nature gathered from a survey will be disseminated to a third party without your consent. If you respond to our surveys, we may use the information to compile and publish anonymous polls and studies or to determine your eligibility for certain programs or events. We maintain the security of both our database and our website to the best of our ability and currently available technology.

Voluntary Submission of Information

Occasionally we may communicate with you concerning matters of mutual interest or wish to include you in a human-interest article. In such cases, we will not publicize your name without your consent.

Third Party Release Protection

Except as provided herein, the Pulmonary Hypertension Association will not sell to any third party your name, address, email address and member name, unless you provide your informed consent, except to the extent necessary to comply with applicable laws, police investigations, or in legal proceedings where such information is relevant. The Pulmonary Hypertension Association allows access to database information by third parties providing technical services, such as email or IT support. In those instances, the third party is bound by these terms and has agreed to hold this information in confidence. Your informed consent shall be in the form of an "opt in" or similar policy.

You understand and agree that the Pulmonary Hypertension Association may disclose to third parties your zip code, gender and/or age, but only in the form of aggregated information.

The Pulmonary Hypertension Association reserves the right to offer you third party services and products based on the preferences that you identify during the registration process and based on your subsequent preferences; such offers may be provided to you by the Pulmonary Hypertension Association.

The Pulmonary Hypertension Association reserves the right to terminate your account if it learns that you have provided false or misleading registration information.

 

Collection of technical information

PHA may use the IP address of all site visitors to assist us in diagnosing problems with our server, analyzing user trends and traffic patterns, tracking user movement, improving web site design and layout, and administering the web site. Your IP address is a number automatically assigned to your computer when you use the Internet, and cannot be linked to personally identifiable information. Accordingly, the information obtained from your IP address may be used only as aggregated and anonymous data, and we will never know who you are unless you specifically tell us. Like many other web sites, we also use "cookies," which are small computer files that we transfer to your hard drive, for the proper functioning of our message board.

Questions or Concerns?

If you have any questions, concerns, or comments about our privacy policies or practices, we would like to know what they are so we can address them. Please contact us at PHA@PHAssociation.org or 301-565-3004 x759.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.