Privacy Policy

Last updated: 2017-06-11

This is the Privacy Policy of the CFS-ME Registry website: https://www.cfsme-registry.info (the “Site”), operated by Michael Lapenna (“us”, “we”, or “our”). This page informs you of our policies regarding the collection, use and disclosure of Information we receive from users of the Site.

By accepting the Privacy Policy during Signup or by visiting and using the Site, you expressly consent to our collection, use and disclosure of your information in accordance with this Privacy Policy.


Information Collection

While signing up on our Site, we you to provide us with certain personally identifiable information that can be used to contact or identify you. Personally identifiable information may include, but is not limited to your name and address (“Personal Information”).  We use personal information, and other information we obtain from your current and past activities on the Site, to provide to you the services offered by the Site and deliver information to you that, is relevant to your interests, customizes your experience, detects and protects us against error, fraud and other criminal activity, enforces our Terms of Service, provides you with system or administrative messages, and as otherwise described to you at the time of collection.  These uses improve the Site and better tailor it to meet your needs, so as to provide you with a smooth, efficient, safe and customized experience while using the Site.


What Information Do We Collect?

Our primary purpose in collecting personal information from you is to be able to contact you and locate you geographically in relation to the medical and research facilities of CFS/ME researchers. We also collect details of your medical condition and symptoms regarding Chronic Fatigue Syndrome and/or Myalgic Encephalomyelitis.

Anonymized Aggregated Data. We aggregate and anonymize member information including country of residence and CFS/ME symptoms into generalized statistics and may disclose such information in a non-personally identifiable manner to the Site and prospective researchers. However, in these situations, we do not disclose any information that could be used to identify you personally.

In general, you can browse parts of the Site without telling us who you are or revealing any personal information about yourself. Once you become a signed up member, we require you to provide various contact and identity information, and you are no longer anonymous to us. On these forms, we indicate which fields are required and which fields are optional.

Forum. If and when we have a Forum/Blog, if you post on our forum or blog your username and other information you include is displayed in your postings or comments, and is therefore available to the public. All of your activities in the public areas of the forum will be identifiable to your username, and other people can see your published content. If you disclose personal information in any posting in our forum or blog and wish to have it removed, please contact us at privacy@cfsme-registry.info .

Referral Service.  If you choose to use our referral service to tell a friend about our site, we will ask you for your friend’s name and email address. We will automatically send your friend a one-time email inviting him or her to visit the site. CFS-ME Registry stores this information for the sole purpose of sending this one-time email and tracking the response activity. Your friend may contact us at privacy@cfsme-registry.info to request that we remove this information from our database.

Legal Requests, Business Transitions and Emergencies. In certain situations, CFS-ME Registry may be required to disclose personal data in response to lawful requests by public authorities, including to meet national security or law enforcement requirements. CFS-ME Registry may disclose your personal information (a) to any governmental authority as part of an investigation to determine our compliance with any applicable law, rule, or regulation (including privacy laws, rules, and regulations), (b) in response to a court order, subpoena, discovery request, or other lawful judicial or administrative proceeding, (c) as otherwise required under any applicable law, rule, or regulation, and (d) in good faith, to protect or defend the rights or property of CFS-ME Registry and other users and (e) if CFS-ME Registry is involved in a merger, acquisition, or sale of all or a portion of its assets, you will be notified via email and/or a prominent notice on our website of any change in ownership or uses of your personal information, as well as any choices you may have regarding your personal information.

Cookies. Cookies are files with small amount of data, which may include an anonymous unique identifier. Cookies are sent to your browser from a web site and stored on your computer’s hard drive. Like many sites, we use “cookies” to collect information. You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our Site.

You always have the option to not provide information by choosing not to become a member or by not using the particular page/form of the Site for which the information is being collected.


Security

CFS-ME Registry strives to protect your personal information. For security of transactions, we use the Secure Sockets Layer (SSL) protocol, which encrypts all information you send to us or enter on the website. The encryption process protects your information, by scrambling it before it is sent to us from your computer. Once CFS-ME Registry receives your transmission, we make commercially reasonable efforts to ensure its security on our system. Unfortunately, no data transmission over the Internet can be guaranteed to be 100% secure. As a result, while we strive to protect your personal information, we cannot warrant the security of any information you transmit to us. More information about security is available on the Site and in our Terms of Service. If you have any questions about the security of your personal information, you can contact us at privacy@cfsme-registry.info.


Data Retention

We will retain your information for as long as your account is active or as needed to provide you services. We will retain and use your information as necessary to comply with our legal obligations, resolve disputes, and enforce our agreements.


Correcting, Updating or Deleting Your Account

Upon request CFS-ME Registry will provide you with information about whether we hold any of your personal information. To review, delete and update your personal information to ensure it is accurate, you may login into your account to make the changes.  While you are an active member, we retain the information you submitted on the Site.  If you desire to be removed from the Site (and have all your information destroyed), you may make such a request via the Site’s Feedback form.


Log Data

Like many websites, we collect information that your browser sends whenever you visit our Site (“Log Data”). This Log Data may include information such as your computer’s Internet Protocol (“IP”) address, browser type and version, the pages of our Site that you visit, the time and date of your visit, the time spent on those pages and other statistics.  In addition, we may use third party services such as Google Analytics that collect, monitor and analyze this information.


Additional Policy Information

Invitations: You have the opportunity to invite others to work with you through your CFS-ME Registry account. To do that, CFS-ME Registry asks you to manually enter your contacts’ email addresses. As you direct, we then send them an invitation on your behalf or other notices reflecting changes you make to their status in your account.

If you click on a link to a third-party site, you will leave the CFS-ME Registry site and go to the site you selected. If you elect to use a third-party product or service in conjunction with CFS-ME Registry, you yourself enter into a license agreement with the third party for use of their product or service and their use of your data. Because we cannot control the activities of third parties, we cannot accept responsibility for any use of your personal information by such third parties, and we cannot guarantee that they will adhere to the same privacy practices as CFS-ME Registry.  We encourage you to review the privacy policies of any other service provider from whom you request services. If you visit a third party website that is linked to a CFS-ME Registry site, you should read that site’s privacy policy before providing any personal information.

With your consent we may post your testimonial along with your name. If you want your testimonial removed please contact us at privacy@cfsme-registry.info.

Our website may include social media features, such as the Facebook and Twitter buttons and widgets, such as the Share this button or interactive mini-programs that run on our site. These features may collect your IP address, which page you are visiting on our site, and may set a cookie to enable the feature to function properly. Social media features and widgets are either hosted by a third party or hosted directly on our Site. Your interactions with these features are governed by the privacy policy of the company providing it.


Notification of Privacy Statement Changes

We may update this privacy statement to reflect changes to our information practices. We encourage you to periodically review this page for the latest information on our privacy practices.  If we make any material changes to this Privacy Policy, we will notify you either through the email address you have provided us, or by placing a prominent notice on our website. We reserve the right to update or change our Privacy Policy at any time. Your continued use of the Service after we post any modifications to the Privacy Policy on this page will constitute your acknowledgment of the modifications and your consent to abide and be bound by the modified Privacy Policy.


Questions or Comments?

It is our goal to make our privacy practices easy to understand. If you have questions, concerns or if you would like more detailed information, please email us at:

Michael Lapenna
michael.lapenna@cfsme-registry.info
852 Palmerston Ave
Toronto, ON
M6G 2S1 Canada