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Privacy Policy and Internet Security



The Transient Global Amnesia TGA Project 2023 has grown in its Internet presence. This growth has created a couple of concerns that this document addresses. The TGA Project is a patient-administered web-based community. We are not medical professionals; however, we do have limited access to TGA community members’ medical information. We are not a chat room. We have a small presence on and for announcements. Our website follows a healthcare informational format with References and a Research Index. Our testimonials are labeled as such. Our opinion articles are labeled as such. We only require a name and E-mail address to enroll. There are no fees to utilize our website. We accept no donations. We remain a kitchen-table patient advocacy group of volunteers with no dedicated funding sources, no financial backers, and no fundraising efforts.


TGA Project Internet Security Protocol:

We abide by the following regulations and certifications:

  1. HIPAA Health Insurance Portability and Accountability Act of 1996 Public Law 104-191 adopted national standards for electronic health care transactions and code sets.

  2. GDPR General Data Protection Regulation 2016/679 is a regulation in EU law on data protection and privacy for all individual citizens of the European Union and the European Economic Area.

  3. Health on the Net Foundation is a Geneva, Switzerland-based not-for-profit organization that promotes a code of conduct for websites providing health information and offers certificates to those in compliance. The TGA Project certification number is 381844.


TGA Patient Inquires:

Inquires have increased as our internet presence has grown.

Our website at: lists the following means of contact:

  1. By E-mail at

  2. Our website has several contact points linked directly to the above E-mail address.

  3. Our TGA Project’s physical address is 6226 Little York Lake Rd. Preble, NY USA 13141.

  4. By telephone or text messages at (607) 283-3455

  5. 98% of the inquiries to the TGA Project are by E-mail, so a paper trail is established for date, time, and content.


TGA Project References:

Generally, TGA patient contact is in regard to their happiness in finding our website so informative and patient-directed. Occasionally we are contacted with direct medical questions or requests for information that fall under HIPAA & GDPR privacy protection (see above HIPAA & GDPR). Also, some TGA patients contact us searching for medical help or referrals. As we are TGA patients ourselves, we have no medical training, certification, or licensing. We only offer coping suggestions, other informational website addresses, and general patient-to-patient support. We charge no fees and do not take donations. We have no direct or binding affiliations with any medical providers, hospitals, pharmaceutical companies, or other outside sources. At the writing of this document, there are 858 TGA Community Members from 24 countries.


The following mutual collaboration arrangements are free and non-binding:

1. NIH (National Institutes of Health)

       GARD (Generic and Rare Diseases Information Center)

2. NORD (National Organization for Rare Disorders)

3. EURORDIS (European Organization of Rare Diseases)


5. Mayo Clinic’global-amnesia/symptoms-causes/syc-


6. Medical Alert Jewelry

7. Rare Patient Voice

8. Sanford Research

       CoRDS (Coordination of Rare Diseases at Sanford)



The following collaboration does have a fee structure:

10. Health on the Net Foundation Certification # 381844 for our website at

       Their address is:

(This is an international internet certification. Obtaining it is a very involved process that we have been involved in since our first website in 2017. This foundation does charge a $65.00 fee for recertification. Richard Holl has personally paid the fees.)

Health on the Net Certification & Verification:

HON Conduct 381844



For us, the security of your data is a real commitment, and we have always limited ourselves to collecting only the minimum of your personal information. In accordance with the new European Union General Data Protection Regulation (GDPR), we have updated our Privacy Policy and initiated the necessary changes such as the appointment of a Data Protection Officer and a direct email address to contact the DPO regarding the protection of your private data to ensure that our sites comply with this legislation. We also follow the guidelines of the US Health Insurance Portability and Accountability of 1996 (HIPAA).




Information We Collect:

We collect only the following information about you: Your first name, last name, US state or an international country, and your email. Your information will be recorded in our own Microsoft Excel Spreadsheet. The only person who can access this Spreadsheet is Richard Holl (address listed on our Contact Page). This information is used only for our own statistics. If a research organization contacts us for medical research patients, we will notify each of our TGA Community Volunteers to contact said research organization directly.   


The information you provide us directly:

We may ask for certain information such as your last name if you correspond with us as we may have more than one Sally or Steve. We may also retain any messages you send through the Service and may collect the information you provide in User Content you post to the Service, such as a poll, survey or questionnaire so labeled as a TGA Project Service. We use this information to operate, maintain, and provide to you the features and functionality of the Service. Only your first name if you choose to disclose it, will be published publicly in your Testimonial if you submit a Testimonial. Our website is open for everyone to read an article, post, testimonial, or blog. The platform user has the possibility to modify or erase their blog posts.


Information we may receive from third parties:

We do not receive any information about you from third parties You should always review, and if necessary, adjust your privacy settings on third-party websites and services before linking or connecting to them.


Inviting a friend or an additional family member to use our Service:

If you choose to invite a third party to the Service, you may directly choose a friend to invite through your mobile device’s contact list – but we do not require that you import your contacts list to the Service, and we do not retain the information contained in your contacts list. You understand that by inviting a friend to TGA Project, you need to directly send a text or email from your personal account and that we are not storing your contact list or needing your contact list. In addition, you understand and agree that normal carrier charges may apply to communications sent from your phone. Since this invitation is coming directly from your email or phone, we do not have access to or control this communication.


Finding your friends on our  Service:

We do not have a search feature that allows you to locate other  TGA Volunteers. If you choose to find your friends through other social media sites, then you understand that the information these sites use to conduct this type of search is governed by their privacy policies and your account settings on those sites. Note that we do not retain any information contained in your contacts list or information from social media sites about your contacts, and we do not use such information.


Analytics information:

We may directly collect analytics data, or use third-party analytics tools and services provided by Google Analytics, to help us measure traffic and usage trends for the Service. These tools collect information sent by your browser or mobile device, including the pages you visit and other information that assists us in improving the Service. We collect and use this analytics information in aggregate form such that it cannot reasonably be manipulated to identify any particular individual user.


Cookies information:

We do not have or utilize cookies in any of our programs. You can reset your web browser to refuse all cookies or to indicate when a cookie is being sent.


Logfile information:

Any Log file information is automatically reported by your browser or mobile device each time you access the Host Service we use which is These server logs may include anonymous information such as your web request, Internet Protocol (“IP”) address, browser type, referring / exit pages and URLs, the number of clicks and how you interact with links on the Service, domain names, landing pages, pages viewed, and other such information. Please refer to their particular policies.


We use the information we collect or receive, such as your email address, to communicate directly with you. We may send you emails containing newsletters, promotions, and special offers. If you do not want to receive such email messages, you will be given the option to opt-out or change your preferences. We also use your information to send you Service-related emails (e.g., account verification, and reminders, changes/updates to features of the Service, technical and security notices). You may not opt-out of Service-related emails.


Sharing of Your Information:

We will not rent or sell your information into third without your consent.


Instances where we are required to share your information:

TGA Project will disclose your information where required to do so by law or subpoena or if we reasonably believe that such action is necessary to (a) comply with the law and the reasonable requests of law enforcement; (b) to enforce our Terms of Use or to protect the security, quality or integrity of our Service; and/or (c) to exercise or protect the rights, property, or personal safety of TGA Project, our Users, or others.


Ads on TGA Project:



Our website does not host any form of advertisement. Our host server does place a link at the top of our header in exchange for free website hosting. The only ads on our site are or with specific providers on a no-charge basis to provide users access to their acceptable products related to Transient Global Amnesia.


The TGA Project Privacy Policy does not apply to, and we cannot control the activities of third-parties. Please consult the respective privacy policies of such third parties or contact such third parties for more information.


How We Store and Protect Your Information:


Storage and Processing:

Your information is collected through the Sand processed Marathon, NY, USA. If you are located in the European Union or other regions with laws governing data collection and use that may differ from U.S. law, please note that we may transfer information, including personal information, to a country and jurisdiction that does not have the same data protection laws as your jurisdiction, and you consent to the transfer of information to the U.S. for use and disclosure of information about you as described in this Privacy Policy. It is our intention to honor or exceed the legal requirements for medical/health information privacy.


Keeping your information safe:

TGA Project cares about the security of your information and uses commercially reasonable safeguards to preserve the integrity and security of all information collected through the Service. To protect your privacy and security, we take reasonable steps (such as requesting a unique password) to verify your identity before granting you access to your account. You are responsible for maintaining the secrecy of your unique password and account information, and for controlling access to your email communications from TGA Project, at all times. However, the TGA Project cannot ensure or warrant the security of any information you transmit to TGA Project or guarantee that information on the Service may not be accessed, disclosed, altered, or destroyed. Your privacy settings may also be affected by changes to the functionality of third-party sites and services that you add to your computer, such as social networks. TGA Project is not responsible for the functionality or security measures of any third party.


Compromise of information:

In the event that any information under our control is compromised as a result of a breach of security, TGA Project will take reasonable steps to investigate the situation and where appropriate, notify those individuals whose information may have been compromised and take other steps, in accordance with any applicable laws and regulations.


Your Choices About Your Information:

We utilize G-mail for our emails. Our emails are limited to groups of 100. We currently have A, B, and C groups. We also have 3 special groups: Limited, Private TGA, and Private Mayo. When you sign-up you are assigned a sequential number along with your first name. We ask for last names and US state or international country for duplicate first names and for our community map. At any time you may request to move from a public group to a Limited or Private group. Limited only receive a monthly message. A, B, C, & D groups are public groups generally sent as BBC Blind Copy messages. Private is individual emails with just one recipient after the other groups are sent their messages. So private messages may be several days behind. 


You control your account information and settings: You may update your account information and email-communication preferences at any time by email to our Website Admin at You can also stop receiving email communications from us by utilizing your "Right to be Forgotten" our Opt-Out request at


We make every effort to promptly process all unsubscribe "Right to be Forgotten" requests. If you have any questions about reviewing or modifying your account information, you can contact us directly at


We don't use Blog pages. We have Testimonial pages where individuals may write about their own TGA experience.


How long we keep your private profile information:

Following termination of your User account, TGA Project may retain your private profile information for a commercially reasonable time for backup, archival, or audit purposes. For the avoidance of doubt, any information that you choose to make public on the service may not be removable.


Children’s Privacy:

TGA Project does not knowingly collect or solicit any information from anyone under the age of 18 or knowingly allow such persons to register as Users. The Service and its content are not directed at children under the age of 18. In the event that we learn that we have collected personal information from a child under age 18 without verification of parental consent, we will delete that information as quickly as possible. If you believe that we might have any information from or about a child under 18, please contact us at


Links to Other Websites and Services:

We are not responsible for the practices employed by websites or services linked to or from the Service, including the information or content contained therein. Please remember that when you use a link to go from the Service to another website, our Privacy Policy does not apply to third-party websites or services. Your browsing and interaction on any third-party website or service, including those that have a link or advertisement on our website, are subject to that third party’s own rules and policies. In addition, you agree that we are not responsible and we do not control over any third-parties that you authorize to access your User Content. If you are using a third-party website or service (like Facebook, Google groups, etc.) and you allow such a third-party access to your User Content you do so at your own risk. This Privacy Policy does not apply to information we collect by other means (including offline) or from other sources other than through the Service.


If you have any questions, please contact our Website Admin at the email address in blue at the bottom of this and every page. We will reply via return email within 48 hours unless world-wide events interfere.

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