Who We Are:

The World Moyamoya Alliance (“WMA”) is a group of moyamoya patients, family members, friends, and interested persons who are trying to raise awareness [need additional language]. As used in this Privacy Policy, “we”, “us” or “our” refers to WMA and the WMA team.  

 

What is a Privacy Policy?

WMA values and respects the privacy of our visitors. Generally, a privacy policy identifies how information about you, of a personal nature, is collected, protected, and used. By using the pages on this site or other services covered by the posted Privacy Policy, you are accepting the practices described in the Privacy Policy.

 

Definitions:

• “Personal Information” means information that identifies (whether directly or indirectly) a particular individual, such as the individual’s name, postal address, email address, telephone number, and birth date. When anonymous information is directly or indirectly associated with Personal Information, the resulting information also is treated as Personal Information.

 

• “Anonymous Data” means information that does not directly or indirectly identify, and cannot reasonably be used to identify, an individual person.

 

• “Aggregate Data” means information about groups or categories of people, which does not identify and cannot reasonably be used to identify an individual person.

 

• “Contact Information” means information such as your name, mailing address, telephone number, and e-mail address. We may also use third-party services to supplement or to ensure accuracy of contact information.

 

• “Demographic Information” means information about your gender, race, or ethnicity, marital status, geographic location, and/or primary language. Demographic Information would only be requested as necessary to provide appropriate support and you may decline to provide such information. We may also use publicly available data or third-party services to supplement this information.

 

• “Health Information” means information about your relationship to moyamoya or other diseases or syndromes, and, if applicable, your moyamoya or other diseases or syndromes, and your date of diagnosis, status, or current treatment. For instance, this information may be needed to assist you if you contact WMA seeking moyamoya information or requesting support from WMA. This health information may be transmitted electronically for the uses and/or disclosures described in this Privacy Statement. 

 

• “Financial Information” means information about payment information such as your credit card number in order to process your transaction if you donate to WMA or make a retail purchase on a WMA site. We may also collect the name of your employing company, if you would like for that company to make a matching donation. We may use a third-party payment service to process payments. We will retain your credit card information only for as long as necessary to process the transaction. 

 

• “Preferences” means information about how you would like to be contacted by WMA.  

 

• “Call Recordings and Chat Transcripts” means information from when you contact WMA for information or assistance. WMA may record your call or maintain a transcript of the chat for training and quality assurance purposes. The information contained in these transcripts will depend on what you voluntarily provide to WMA.

 

What Information We Collect: 

We may collect items such as Personal Information, Contact Information, Preferences, Demographic Information, Health Information, Financial Information, and information from Call Recordings and Chat Transcripts. Each of these is only collected if you submit it voluntarily.

 

WMA does not collect such items from individuals unless they provide it to us as described in this Privacy Policy. For example, we do not require you to register or provide information to us in order to view our site.  

 

Please note that once collected, WMA may combine this information with other information collected from external sources, where permitted by applicable law.

 

WMA may automatically collect certain technical information from your computer such as your Internet service provider, your Internet Protocol Address, your browser type, your operating system, the web pages viewed, the web pages viewed immediately before and after accessing the website, and the search terms entered to get to our site. This information may contain Personal Information. This information will only be used and processed by us to improve and customize the WMA website. We and our service providers may collect this information using "cookies," which are small text files that many websites save on your computer, or similar technologies. 

 

WMA may also collect and create Anonymous Data and Aggregate Data.

 

How We Collect Information:

We collect your Personal Information and other types of private information related to you when you provide it to us in the course of requesting or ordering products, services or information from us, registering with us (e.g., for a program, an event, or an activity), subscribing to our services, participating in public forums on the WMA website, responding to surveys, or otherwise interacting with us through our websites and applications. We collect Anonymous Data through technology, such as cookies, and Web beacons, that we use to operate our websites and applications. 

 

How We Use Information: 

WMA may use your Personal Information and other types of private information related to you in a number of ways, such as:

 

• Responding to your requests and communicating with you;

• As appropriate, helping you understand your personal health information; 

• Managing your preferences;

• Verifying your identity (such as when you access your account information);

• Preventing fraud and enhancing the security of your account or the WMA website;

• Operating, evaluating and improving our programs (including developing new products and services; improving existing products and services; performing data analytics; and performing accounting, auditing and other internal functions);

• Performing analytics concerning your use of our online services, including your responses to our emails and the pages and advertisements you view;

• Providing you tailored content and marketing messages;

• Processing donations and purchase transactions;

• Complying with and enforcing applicable legal requirements, relevant industry standards, contractual obligations, and our policies;

• For any other purposes that we may specifically disclose at the time you provide or we collect your information; and

• We may also use data that we collect on an aggregate or anonymous basis (meaning it does not identify any individuals) for various purposes, where permissible under applicable laws and regulations, to help deliver products, services, and content that are better tailored to the users of our services and for other purposes.

 

How We May Share Your Information with Others:  

WMA may share your Personal Information and other types of private information related to you in a number of ways, such as:

 

• With third parties providing services for WMA or on our behalf, such as order fulfillment, package delivery, customer service, event registration management, payment processing, financing, advertising, marketing, or data analytics services. However, such service providers are prohibited from using your personal information for their marketing purposes or any other purpose not specified by us or required by law.

 

• With third parties to enforce WMA’s policies and regulations, to ensure the safety and security of the WMA team, volunteers, donors, employees and third parties, to protect WMA’s rights and property and the rights and property of the WMA team, volunteers, donors, employees and third parties, to comply with legal process, or in other cases if we believe in good faith that disclosure is required by law.

 

Your Controls and Choices: 

WMA respects your privacy and recognizes that you may wish to limit the ways in which we contact you and/or share your Personal Information, including for fundraising purposes. On many of our email communications, you may manage what type of communications you want to receive, or you may opt-out from receiving certain email communications. However, we will continue to send transaction-related emails.

 

Your Right to Access, Correct, and Delete Your Personal Information:

You have the right to ask us which Personal Data WMA holds about you. In addition, you have the right to correct or delete Personal Data we hold about you. If you want to request a correction or deletion of the Personal Data we hold about you, you must contact us by mail at:  

World Moyamoya Alliance

2126 E, Victory Drive, #191

Savannah, GA 31404

 

Marketing: 

WMA does not provide lists of current and former guests, users, or visitors of the WMA website for commercial purposes, such as selling or renting such lists to other businesses for their direct marketing purposes.  WMA may send you offers and promotions for our products, programs, and events, or those that we think may be of interest to you, and you may opt-out or unsubscribe from such offers by either following the instructions provided in WMA’s communications to you or changing your preferences.

 

Information on Third Parties: 

If you disclose any Personal Information relating to other people to us, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Statement

 

Tracking Techniques: 

While WMA uses cookies to track user activity on our website, we do not collect personal information about your online activities over time as you move across other websites and online services. Web browsers can transmit Do Not Track (“DNT”) signals that indicate that a user does not wish to have activity tracked. However, no universally accepted standard exists for how to interpret such signals, and we are unable to respond to Do Not Track signals. Your DNT setting should not affect your experience or interaction with our website. 

 

Children’s Privacy (BSA)

WMA is committed to appropriate digital privacy for the protection and safety of youth. As such, WMA does not collect the personal information of children under the age of 13 unless a child’s parent or legal guardian provides it to us. In any event, consistent with the U.S. Children’s Online Privacy Protection Act (COPPA), a parent may review or have deleted their child’s personal information, and prohibit its further collection or use. Additionally, in the unlikely event WMA discovers we have collected personal information from a child other than as described in this Privacy Policy, we will either delete the information immediately or promptly seek the parent or legal guardian’s consent to use the information. If you have a request in relation to the personal information of your child below the age of 13, please send an email to WorldMoyamoyaAlliance@gmail.com.  

 

Information Protection:

WMA takes every possible measure to ensure that your information is not compromised in any way; The security, integrity and confidentiality of your information are extremely important to us. We use technical, administrative and physical security measures that are designed to protect guest information from unauthorized access, disclosure, use, and modification. From time to time, we review our security procedures to consider appropriate new technology and methods. Please be aware though that, despite our best efforts, no security measures are perfect or impenetrable. We will retain your Personal Information for the length of time needed to fulfill the purposes outlined in this privacy policy, unless a longer retention period is required or permitted by law.

 

If you choose to send us an email, we may retain the contents of your email message, our reply, and your email address as part of our ongoing service efforts. We reserve the right to contact you after you have contacted us and may send future emails and/or surveys to you about WMA. You may notify us via email at WorldMoyamoyaAlliance@gmail.com if you wish to discontinue electronic communication.

 

Comments and Questions: 

If you have any questions about our Privacy Policy, please contact us at WorldMoyamoyaAlliance@gmail.com or write to us at World Moyamoya Alliance, 2126 E. Victory Drive, #191, Savannah, Georgia, 31404.

 

Changes:

WMA may change this Privacy Policy at any time and without prior notice. If so, we will publicize that this Privacy Policy was changed by appropriate means such as by posting the revised policy on this page with a new “Last Updated” date. In some cases, because there were changes, you may be asked to agree again to this Privacy Policy or other requirements, even if you previously agreed to them. Any changes to this Privacy Policy will become effective when posted unless indicated otherwise.  

 

Law and Disputes:

The WMA website is controlled and operated by WMA from the United States and is not intended to subject us to the laws or jurisdiction of any state, country, or territory other than that of the United States. Your Personal Information may be stored and processed in the United States where our servers are located and our central database is operated. In certain circumstances, courts, law enforcement agencies, regulatory agencies or security authorities may be entitled to access your Personal Information.

 

The WMA Privacy Policy and all matters, disputes, or claims relating to WMA, the WMA team, and this Privacy Policy, is governed by and will be construed in accordance with, the laws of the state of Georgia as it is applied to contracts entered into by residents of the state of Georgia, excluding any conflict of laws, rules, or similar principals, and the applicable laws, regulations and treaties of the United States of America.

 

Any legal suit, action, or proceeding arising out of, or related to, any dispute with respect to this Privacy Policy, WMA, and the WMA team, only be brought in the federal courts of the United States or the courts of the State of Georgia, in each case located in the State of Georgia, although WMA retains the right to bring any suit, action, or proceeding (including injunctive or other appropriate relief) against you for the breach of this Privacy Policy in your state or country of residence or any other relevant state or country. You waive any and all objections to the exercise of jurisdiction over you by such courts and to venue in such courts.

 

European Union’s General Data Protection Regulation (GDPR):

To the extent WMA collects or processes Personal Information of individuals in the European Union, we will do so in accordance with this policy. Should you have questions or concerns regarding your Personal Information under the GDPR, or to submit a data subject request regarding your Personal Information under the GDPR, please send an email to WorldMoyamoyaAlliance@gmail.com.   

 

California Residents: 

If you are a California resident, you may have certain additional rights.

 

• California Civil Code § 1798.120 may permit you to “opt out” of the “sale” of your “Personal Information” to “third parties” (as those terms are defined in the California Consumer Privacy Act).  Furthermore, California Civil Code §§ 1798.100 and 1798.105 may permit you to make requests to access categories and specific pieces of Personal Information about you, as well as to request to delete Personal Information about you. 

 

• California Business and Professions Code § 22581 permits registered users who are minors to request and obtain removal of content they have publicly posted. To submit such requests, please send an email to WorldMoyamoyaAlliance@gmail.com with a detailed description of the specific content or information at issue. Please be aware that such a request does not ensure complete or comprehensive removal of the content or information you have posted and that there may be circumstances in which the law does not require or allow removal, even if requested.