Privacy Policy

 

COMMITMENT TO YOUR PRIVACY

As a non-profit organization, the Hypertrophic Cardiomyopathy Association™ (HCMA) places a high priority on protecting your privacy. Your privacy on the Internet is of the utmost importance to us.  Because we gather certain types of information from visitors to our own web site, we feel you should fully understand the terms and conditions surrounding the capture and use of that information. This privacy statement discloses what information we gather and how we use it.


In summary, the HCMA:

·          Will not release personal identifying information about you without first obtaining your consent; and

·          Will not knowingly collect or use personal identifying information from children younger than 13.

 

 

 

 

OVERVIEW OF INFORMATION THIS SITE GATHERS AND TRACKS

 

The HCMA gathers two types of information from visitors to our website (4hcm.org):

 

1.       Information provided by visitors through optional, voluntary submissions.

o         These are voluntary submissions to receive our electronic newsletters, to participate in our message boards or forums, to email a friend, and from participation in polls and surveys

 

2.       Information the gathered through aggregated tracking information derived mainly by tallying page views throughout our site.

o         This information allows us to better understand the demographics of visitors to our website.

 

 

The HCMA Gathers User Information In The Following Processes:

 

Optional Voluntary Information

We offer the following free services, which require some type of voluntary submission of personal information by users:

 

·          Electronic newsletters (Dispatches)
We will offer a free electronic newsletter to users. The HCMA gathers the email addresses of users who voluntarily subscribe. Users may remove themselves from this mailing list by following the link provided in every newsletter that points users to the subscription management page. Users can also subscribe to the newsletters at the time of registration.


·          Message boards/forums
Users of the site's Message Boards and Forums must register separately for these services (both are free of charge) in order to post messages, although they needn't register to visit the site. During registration the user is required to supply a username, password, and email address.


·          "E-mail this to a friend" Service
Our site users can choose to electronically forward a link, page, or documents to someone else by clicking "e-mail this to a friend". The user must provide their email address, as well as that of the recipient. This information is used only in the case of transmission errors and, of course, to let the recipient know who sent the email. The information is not used for any other purpose.


·          Polling
We may offer interactive polls to users so they can easily share their opinions with other users and see what our audience thinks about important issues. Opinions or other responses to polls are aggregated and are not identifiable to any particular user. The HCMA may use a system to "tag" users after they have voted, so they can vote only once on a particular question. This tag is not correlated with information about individual users.


·          Surveys
The HCMA may occasionally conduct user surveys to better target our content to our audience. We never share any of this information about specific individuals with any third party.


Special note on collecting information on or from Children:   Consistent with the Federal Children's Online Privacy Protection Act of 1998 (COPPA), we will never knowingly request personally identifiable information from anyone under the age of 13 without requesting parental consent.



Automated Usage tracking

The HCMA tracks user traffic patterns throughout the site. However, we do not correlate this information with data about individual users. The HCMA does break down overall usage statistics according to a user's domain name, IP address, browser type, and MIME type by reading this information from the browser string (information contained in every user's browser).

 

Cookies

A cookie is an element of data that a Web site can send to your browser, which may then store it on your system.  The HCMA website makes use of cookies to automatically help provide better services and tailoring your website experience.  They remind us who you are and your preferences for our website based on what you've done and told us before.  The cookie itself does not contain Personal Information although it will enable us to relate your use of this site to information that you have specifically and knowingly provided. They tell us nothing about you personally unless you choose to give us additional information - the only personal information a cookie can contain is information you supply yourself.

 

You do have control over cookies. By modifying your browser preferences, you have the choice to accept all cookies, to be notified when a cookie is set, or to reject all cookies.  Please note that some areas of the website require cookies to function. If you do not allow cookies, you will not be able to participate actively in message boards, forums, polling or surveys or take advantage of personalized content delivery offered by this or any other Internet site.

 

 

 

 

OVERVIEW OF USE OF INFORMATION BY HCMA

The HCMA may use any information voluntarily given by our users to enhance their experience in our site, whether to provide interactive or personalized elements on the site or to better prepare future content based on the interests of our users. 

 

Usage tracking

·          We will collect information from the browser string (information contained in every user's browser) to track visitor of our website.   We will break down overall usage statistics according to a user's domain name or IP address, browser type, and MIME type but we do not correlate this information with data about individual users.   This lets us see which of our features are the most popular so we can better serve our users' needs. It also lets us provide aggregate data about our traffic (not identifying you personally, but showing how many visitors used which features, for example) to outside parties

 

·          The 4hcm.org website will occasionally track and catalog the search terms that users enter in our Search function, but this tracking is never associated with individual users. We use tracking information to determine which areas of our site users like and don't like based on traffic to those areas. We do not track what individual users read, but rather how well each page performs overall. This helps us continue to build a better service for you.

 

Newsletters
The HCMA sends out newsletters to subscribers on a regular schedule (depending on the newsletter), and occasionally send out special editions when we think subscribers might be particularly interested in something we are doing.  We use information that users voluntarily provide in order to send out these newsletters via email or US Postal mail.  The HCMA never shares newsletter mailing lists with any third parties, including sponsors or partners.  You may choose to opt out at any time, which will cease all communications from us.

 

 

SHARING OF THE INFORMATION

The HCMA uses the above-described information to tailor our content to suit your needs and help our medical advisors better understand our website community demographics. This is essential to keeping our service free. We will not share information about individual users with any third party, except to comply with applicable law or valid legal process or to protect the personal safety of our users or the public.

 

E-Mail Privacy
The HCMA does not sell or rent e-mail addresses to anyone outside the organization.


Message Boards / Community Forums

While we take every measure to prevent public disclosure of your personal information by making it only available to subscribers of the message board, we cannot prevent you from posting this information in a public message.   Any information you disclose in these areas becomes public information, and you should exercise caution when deciding to disclose your personal information to people you do not know. If you disclose your e-mail address in a message on a board / forum, you may receive unsolicited e-mails or spam (but never from us). We cannot safeguard the privacy of any such information you choose to disclose online in this manner and you must do so carefully and at your own risk.

 

 

SECURITY

The HCMA operates secure data networks protected by industry standard firewall and password protection systems. Our security and privacy policies are periodically reviewed and enhanced as necessary and only authorized individuals have access to the information provided by our customers.

 

Online Purchases using Credit Cards

When you make a purchase online, we ask you to provide your credit card information so that we can process your payment. During the ordering process, such credit card information is encrypted and transmitted to the HCMA and third-party credit card processors and card issuers that must use your information to process your order. 


External Links
The 4hcm.org website includes links to external websites. These links do not fall under the 4hcm.org domain, and the HCMA is not responsible for the privacy practices or the content of external websites. Your use of any linked website is solely at your own risk.


 

 

 

YOUR CONSENT

 

By using this site, you consent to the collection and use of this information by the HCMA. If we decide to change our privacy policy, we will post those changes on this page so that you are always aware of what information we collect, how we use it, and under what circumstances we disclose it.

 

We collect the following information:

·          Click-stream data

·          HTTP protocol elements

·          Search terms

·          User's Name

·          Computer information

·          User’s location

 

At the user's option, we may also collect the following data:

·          Birth Date

·          Email Address(s)

·          Telephone number(s)

·          Mailing Address(s)

·          HTTP cookies

 

This data will be used for the following purposes:

·          Completion and support of the current activity.

·          Web site and system administration.

·          User targeting.

·          One-time website user session tailoring.

·          Statistical metrics of website visitor traffic.

·          Reporting of anonymous, aggregate, statistical information on web site usage.

·          Login (User ID / Password) retention.

·          Research and development.

 

NOTE: This data will be used by ourselves and our agents.

 

 

 

OPT-OUT POLICY

We give users options wherever necessary and practical. Such choices include:

·          Opting not to register to receive our electronic newsletters.

·          Opting not to participate in certain interactive areas, which completely alleviates the need to gather any personally identifiable information from our users

·          Contacting the Hypertophic Cardiomyopathy Association office by mail at address above to request removal from any or all postal and/or email distribution lists.

 

 

Modifications
The HCMA may amend this privacy policy from time to time; please review it periodically. We maintain the option to modify this privacy at any time by electronic notice posted on our website. Your continued use of our website after the date that such notices are posted will be deemed to be your agreement to the changed terms.


We invite you to contact us if you have questions about this policy.   You may contact the HCMA website administration at admin@4HCM.org, or:

 

Hypertophic Cardiomyopathy Association
328 Green Pond Rd.
PO Box 306

Hibernia NJ 07842

 

Phone:   973-983-7429

Fax:        973-983-7870