Privacy Policy

Effective: May 25, 2018

MEadvocacy.org (aka MEadvocacy) is based in the United States and is a project of May12.org which is a US 501(c)(3) not-for-profit corporation founded in March 2012. Everything we do is guided by our mission of advocating for recognition, definition, and research for myalgic encephalomyelitis.  

MEadvocacy has NO salaried personnel. A list of advisory committee members and volunteers to the organization can be found on our about page. This Privacy Policy applies to the data collected by us, or those working on our behalf, through the information you enter or from the imported data from authorized and approved sources.

MEadvocacy respects the privacy of our users, and we are committed to protecting it through our compliance with this privacy policy which describes the types of information we may collect from you or that you may provide when you use our MEadvocacy website on the NationBuilder platform. MEadvocacy uses the NationBuilder platform for website, communication tools, and our services such as maintaining, protecting, and disclosing information as required by  disclosure laws. NationBuilder is a community organizing system that includes websites, a people database, communications, and finance tools. NationBuilder privacy policy.

Changes to Policy

  • We regularly update and improve the website, and may at times remove features to enhance your ability to use it. Because we are continually trying to improve our website, this Privacy Policy may also need to change. We reserve the right to change the Privacy Policy at any time, but if we do, we will bring it to your attention by placing a notice on the website, and by sending you an email.
  • Upon any changes to the Privacy Policy and those implementations, your use of this website will be seen as an unequivocal agreement to all of the changes.
  • Except for changes by us as described here, no other amendment or modification of this Privacy Policy will be effective unless in writing and agreed upon by both you and us.

User Rights

By using or accessing MEadvocacy’s website or our services in any manner, you acknowledge that you accept the practices and policies described in this Privacy Policy.

If you do not agree with our policies and practices, your choice is not to use our Website or our Services. We collect your personal information to deliver our website and services to you more efficiently. If you do not provide us with the necessary personal information, we will not be able to deliver all the features of our services and website to you as intended. By unsubscribing, we will stop sending you emails as soon as your request is processed and all of your information will be deleted at your request.

Protecting Your Data

Data Collected Through Cookies

COOKIE POLICY: Our site uses first and third party cookies and other technologies so that we can remember you and understand how you use our site. You are not required to agree to cookies in order to have access to the information on our site.

MEadvocacy never sells data, shares data only as needed for third party application services, and does not allow third party services such as Google Analytics to track, collect or upload any data that personally identifies an individual (such as a name, email address or billing information), or other data which can be reasonably linked to such information by Google. MEadvocacy uses Google Analytics for website traffic analysis and Google Ads which supports our search page. They collect cookies from our website and process data per Google’’s privacy policy and Google Ads advertising privacy policy . Visitors can opt-out of Google Analytics for Display Advertising and customize Google Display Network ads using the Ads Preferences Manager. If you would like to opt-out you may use this browser add-on.  

Data Collected Through Forms

123FORMBUILDER service provides a contact form button for MEadvocacy website. Any web form or survey created by MEadvocacy with the translated versions of the 123FORMBUILDER framework and products, along with any information gathered through those web forms and surveys, belong to MEadvocacy and neither 123FORMBUILDER nor the PARTNER can hold ownership over them or be liable for it. (123FORMBUILDER privacy policy)

All online payments are processed through PayPal and credit card information is not retained by MEadvocacy.

MEadvocacy at times may use One Click Politics app to facilitate contacting government officials. (One Click Politics privacy policy)

Data Collected Through Widgets

MEadvocacy offers a Facebook widget to allow users to “like” our Facebook page and share directly from our website. This widget may collect your IP address, your web browser User Agent, store and retrieve cookies on your browser, embed additional tracking, and monitor your interaction with the widget, including correlating your Facebook account with whatever action you take within the widget (such as “liking” our Facebook page), if you are logged in to Facebook. For more information about how this data may be used, please see Facebook’s data privacy policy.

MEadvocacy offers a Twitter button for the convenience of our users. Information about privacy when using this button can be found at:  https://twitter.com/en/privacy.

MEadvocacy offers a Google+ button for the convenience of our users. Information about privacy when using this button can be found at:  https://developers.google.com/+/web/buttons-policy.

General Data Protection Regulation for European Union

On May 25, 2018, the European Union passed an update on the General Data Protection Regulation (GDPR) for all residents in the EU sharing data and personal information online. All users must give written consent (email, electronic signature, etc.) for us to use any of your data, be it personal or otherwise. We will require all users to reconfirm that they have consented to be part of the website.

Please note: In most European countries like France, the law does not require double opt-in. The GDPR does not require double opt-in either. That said, be aware that some countries in Europe (such as Austria and Germany, and specifically in politics), will likely require double opt-in.

This privacy policy covers our treatment of personally identifiable information which may be connected to you individually.  Such information may include name, mailing address, email address, telephone number, or any other information defined as personally identifiable information. Personal Information does not include your personally identifiable information that has been de-identified, pseudonymized, anonymized, aggregated and/or otherwise processed so as to be unidentifiable (i) in such a way that the data can no longer be attributed to a specific individual, or (ii) in such a way that the data can no longer be assigned to a particular individual (by reasonable means) without the use of additional information, and where such additional information is kept separate and under adequate security to prevent unauthorized re-identification of a specific individual such that one could not, using reasonable efforts, link such information back to a specific individual.

We Gather and Use Data for the Following Purposes:

  • to send you emails about blogs we publish, news in the world of ME or other similar neuroimmune diseases;
  • to send you emails to ask for donations to keep MEadvocacy running;
  • to track how each person who joins would like to be contacted;
  • to notate the interactions you have with our organization on social media;
  • to personalize and improve our services;
  • to allow you to set up a user account and profile;
  • to contact you in the manner you prefer;
  • to provide and improve the services; and
  • to analyze how you use the facilities.

Limitation of Liability

A.  TO THE FULLEST EXTENT PERMITTED BY APPLICABLE LAW, IN NO EVENT WILL WE OR OUR AFFILIATES, OR ANY OF OUR RESPECTIVE LICENSORS OR SERVICE PROVIDERS, HAVE ANY LIABILITY ARISING FROM OR RELATED TO YOUR OR YOUR STATES’ AND NATIONS’ USE OF OR INABILITY TO USE THE SITE OR THE RESEARCH FOR:

i. PERSONAL INJURY, PROPERTY DAMAGE, LOST PROFITS, LOSS OR CORRUPTION DATA, LOSS OF GOODWILL, COMPUTER FAILURE OR MALFUNCTION OR ANY OTHER CONSEQUENTIAL, INCIDENTAL, INDIRECT, EXEMPLARY, SPECIAL, OR PUNITIVE DAMAGES;
ii. ANY ACTION YOU TAKE BASED ON THE INFORMATION RECEIVED IN THROUGH OR FROM THE RESEARCH;
iii. YOUR FAILURE TO KEEP YOUR PASSWORD OR ACCOUNT DETAILS SECURE AND CONFIDENTIAL;
iv. THE IMPROPER AUTHORIZATION FOR THE RESEARCH BY SOMEONE CLAIMING SUCH AUTHORITY;
v. STATEMENTS OR CONDUCT OF ANY THIRD PARTY ON THE RESEARCH; OR,

B.  WE DO NOT GUARANTEE THE CONTINUOUS, UNINTERRUPTED OR SECURE ACCESS TO THE RESEARCH, OR ANY RELATED RESEARCH. THE OPERATION OF RESEARCH MAY BE INTERFERED WITH BY NUMEROUS FACTORS OUTSIDE OUR CONTROL.

C.  UNDER NO CIRCUMSTANCES SHALL WE BE LIABLE FOR ANY DAMAGES THAT RESULT FROM THE USE OF OR INABILITY TO USE THE RESEARCH, INCLUDING BUT NOT LIMITED TO RELIANCE BY YOU ON ANY INFORMATION OBTAINED FROM THE SITE OR THAT RESULT FROM MISTAKES, OMISSIONS, INTERRUPTIONS, DELETION OF FILES OR E-MAIL, ERRORS, DEFECTS, VIRUSES, OR DELAYS IN OPERATION OR TRANSMISSION. YOU HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH SHALL APPLY TO ALL CONTENT, DATA, AND INFORMATION SUBMITTED TO THE RESEARCH.

D.  SOME JURISDICTIONS DO NOT ALLOW CERTAIN LIMITATIONS OF LIABILITY SO SOME OR ALL OF THE ABOVE LIMITATIONS OF LIABILITY MAY NOT APPLY TO YOU. IF YOU ARE A CALIFORNIA RESIDENT, YOU WAIVE CALIFORNIA CIVIL CODE §1542, WHICH SAYS: “A GENERAL RELEASE DOES NOT EXTEND TO CLAIMS WHICH THE CREDITOR DOES NOT KNOW OR SUSPECT TO EXIST IN HIS OR HER FAVOR AT THE TIME OF EXECUTING THE RELEASE, WHICH IF KNOWN BY HIM OR HER MUST HAVE MATERIALLY AFFECTED HIS OR HER SETTLEMENT WITH THE DEBTOR.” IF YOU ARE A RESIDENT OF A STATE WITH PROTECTIONS SIMILAR TO CALIFORNIA CIVIL CODE §1542, YOU HEREBY WAIVE SUCH PROVISIONS OR PROTECTIONS.


Showing 1 reaction

  • Colleen Steckel
    published this page 2018-06-10 18:25:31 -0400