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MSA Coalition Privacy Policy

The MSA Coalition Commitment to Privacy

The Multiple System Atrophy Coalition® (the “Coalition”) is committed to protecting your online privacy. Because your privacy is important, we have developed the following Privacy Policy for the multiple-system-atrophy.org website (“Site”) so that you may understand under what circumstances we may collect, use and disclose your personally identifiable information. It also describes the choices available to you regarding our use of your personal information and the steps you can take to access this information and to request that we correct or delete it.

Use and Disclosure of Your Personal Information

The Coalition will collect personal information (such as your name, address, telephone number or e-mail address) and demographic information (such as zip code or age) only if the individual provides the information to the Coalition. When the Coalition receives personal or demographic information, we may use it for reasonable purposes. For example, we may use this information to contact you, via email or regular mail, to provide you with information we believe may be of interest. Such information may also be used for compiling data and analysis to understand your needs and for other programs, research and fundraising activities that support the mission of the Coalition.

Personal Information You Provide to The MSA Coalition

In some cases, you may choose to provide the Coalition with personal information in order to contact us, request our communications by email, volunteer, donate or utilize one of our services. Personally identifiable information will not be sold to or shared with other organizations or third parties. Some examples of places where personal information may be needed for certain optional online activities are as follows:

  • Share Your Story: You may choose to Share Your Story with the Coalition. This could include pictures, videos, and the written word. We will include first names and locations. We will not include the names of doctors, drugs or medical institutions. By submitting your story, you are also giving the Coalition the right to edit and post your story on our website, social media, newsletter, blog and conference platforms.
  • Contact Us: You may email us directly by clicking on the appropriate link on the “Contact Us” page (See “Email Links” below for more information about these types of links). Please note that our Privacy Policy does not protect you when you send unsolicited content, business information, ideas, suggestions, concepts or inventions to us, and such information may be used by the Coalition in accordance with our policies.
  • Mailing List: To register for our newsletters and other updates or activities of the Coalition you will need to provide us with your name, mailing address, and email address (if digital communications are desired). If you no longer desire to receive our communications, you may follow the “unsubscribe” instructions included in our communications and/or contact us directly and request that your email address or physical address be removed from the mailing list.
  • Contributions: If you choose to make a financial contribution to the Coalition, we will need to collect your mailing information and standard credit card information (card number, card type, expiration date) and keep a record of your financial transaction. Credit card numbers immediately undergo a tokenization process by a third-party service provider and the unencrypted numbers are not stored by us or by our payment processor. The encrypted information is only used to perform the transaction and any recurring or guaranteed minimum transactions to which you have agreed.
  • Partners and Vendors: The MSA Coalition works with vendors to help provide services to you. Providers are obligated to reasonably protect your information on The MSA Coalition’s behalf. If we become aware that a Service Provider is using or disclosing information improperly, we will take steps to end or correct such improper use or disclosure.
  • Forum Membership Registration and Participation: When you register as a “member” of the Multiple System Atrophy Coalition Forum, you will be required to provide your email address, member name and password. In addition, you have the option of letting forum members contact you via email in the future. This form may also request additional information, including name, state, occupation and hobbies.This information helps us define the demographic make-up of our visitors online. If you choose to participate in our public forum, please remember that any information that you disclose in these areas becomes public information. You should exercise caution when deciding whether or not to disclose your personal information.

Information The MSA Coalition Collect Automatically

In order to review the success of this Site and how it can be improved, the Coalition keep regular logs of use regarding content and services. Information collected includes, but is not limited to, pages viewed, browsers used to access the site, search terms used and various other non-personally identifiable statistical data. This information is only collected and viewed as aggregated data, without reference to individual users. We may share this aggregate statistical information with other outside companies, but in doing so; we will not disclose personal information. Some examples of how we aggregate such information are as follows:

  • Cookies: Cookies allow us to customize the information we provide according to your profile and preferences. Widely used on the Internet, cookies have become an industry standard. Although a cookie cannot, in and of itself, identify you, it can identify your computer. Your browser is most likely set up to accept cookies automatically. If you’d like to disable cookies, you may do so by adjusting the options or preferences in your browser. However, by doing so, you may lose some of the functionality of our website. For example, cookies must be turned on in your browser to participate and use the public forum. Cookies are used in our public forum to hold your username, password and viewing options, which allow you to login.
  • IP Addresses: An IP address is a number that is automatically assigned to your computer whenever you begin service with an Internet service provider. The Coalition may collect IP addresses for the purposes of system administration and to audit the use of this Site. Each time you log onto this Site and each time you request one of our pages, our server logs your IP address. Although we log your session with us, we will not link your IP address to anything that can enable us to identify you.

Information Security

The MSA Coalition utilizes secure sockets layer, or SSL, to protect information. SSL is an encryption technology that provides secure communications over the Internet. It does this by verifying that the server to which you are connected is actually the one it claims to be. It also encrypts all transactions between the parties communicating. Encryption is the scrambling of information as it is transmitted over the Internet to protect your confidentiality.

Our Site uses SSL protocol when secure communication with you is necessary. For example, SSL protocol is active when you make a donation, which means that the personal and credit card information passing between your computer and our server is encrypted. This means that while your information is in transit it is scrambled so that only the Coalition can reassemble it in its original text format.

Email Links

When some of the links on this Site are clicked, they automatically open up a new mail message from your default email application (e.g., email links to “Contact Us” links). This is a common feature on websites, which are used to enable you to email directly from your email account. Any message sent this way will be as private a communication as any other email you would send from your email account. Be sure to take note of whom you are sending the message to by looking in the “To:” box of your new message. We may also have put a subject heading in the “Subject:” box and/or attached some content in the body of the message or as an attachment (e.g., “Email a Page to a Friend”). As with all email, be sure to use caution with regard to what information you are sending and to whom you are sending it. Once sent, the recipient will know your email address and any other information provided in the body of the message or as an attachment.

External Links

Except as otherwise indicated, our privacy policies apply only to your use of this Site. This Site contains links to other sites. We do not disclose personally identifiable information to those operating linked sites and we are not responsible for their privacy practices. Links to other sites do not imply an endorsement of the materials or policies of those websites. You should read the privacy policies of each site you visit to determine what information that site may be collecting about you.

Legal Requirements

Notwithstanding anything to the contrary, we may release your personal information to third parties: (1) to comply with valid legal requirements such as a law, regulation, search warrant, subpoena or court order; or (2) in special cases, such as a physical threat to you or others.
Your participation and interaction at our website indicates your acceptance of these policies.