Privacy Policy

Privacy Policy

Last updated: 6/6/2018

Protecting your privacy is very important to The Mastocytosis Society (“TMS”). We provide this Privacy Policy because you have the right to know what personal information we collect, how it is protected and used, and the circumstances under which it may be disclosed. By visiting, you are accepting the practices described in this Privacy Policy.

This Privacy Policy is part of our Terms of Use.


Information Collected

This website ( allows individuals to submit email information and preferences through our membership subscription form as well as contact information via the donation forms.

We do not collect or retain any personally-identifiable information (“PII”) unless you choose to provide it to us. Like most websites, we do automatically collect some data about your visit to our website to help us better understand how the public uses the site and how to make the site more helpful. The Mastocytosis Society may reach out to individuals for extended communications related to the preferences they selected but no personal information will be shared without the expressed written approval of those individuals.


Use of Personally-Identifiable Information

PII refers to information that tells us specifically who you are, such as your name, phone number, email address, postal address, and possibly information relating to certain support or customer service issues. Any PII you choose to give us will be used solely for the purpose for which it is intended and as described in this policy. For example, if you choose to utilize the “Contact Us” function, you are providing PII to us, which we shall use only to respond to your inquiry. Furthermore, Members are required to provide us a valid email address during the membership registration process. We shall use the Members’ email addresses solely to communicate with Members about their membership.  We may also use your email address and other PII to inform you regarding fundraising initiatives in which we are engaging.  If you do not want to receive fundraising communications, you may contact us at


We do use vendors to assist us in providing services to you. Those vendors have their own privacy policies when you go onto their websites.  They may make use of your PII as described on their websites.


Aggregate Information

When you visit any website, certain information about your visit can be collected. We automatically collect and temporarily store certain general, non-personal, statistical information when you visit our website from your computer or mobile device, including:

  • Domain from which you access the Internet;
  • IP address (an IP address is a number that is automatically assigned to a computer when accessing the Internet);
  • Operating system and information about the browser used when visiting the website;
  • Date and time of your visit;
  • Length of your visit;
  • Pages you visited;
  • Address of the website that connected you to our website (such as or;
  • Hyperlinks you clicked on;
  • Location information; and,
  • Demographic and interest data.

TMS uses Google Analytics and cookies to collect this information, which we use to improve our website.



Google Analytics gathers information automatically and continuously; no PII is collected. Our staff conducts analyses and reports on the aggregated data from Google Analytics and those reports are only available to our funders, managers, communications and web teams, and other designated staff who require this information to perform their duties. Information collected by Google Analytics is retained as long as TMS maintains its Google Analytics account.



When you visit any website, its server may generate a piece of text known as a “cookie” to place on your computer. The cookie allows the server to “remember” specific information about your visit. The cookie makes it easier for you to use the dynamic features of websites. Cookies from our website only collect information about your browser’s visit to the site; they do not collect PII about you.


There are two types of cookies, temporary and persistent. Temporary cookies last only as long as your browser is open. Once you close your browser, the cookie disappears. Persistent cookies are stored on your computer for longer periods.


We use temporary cookies to let our server know that you are continuing a visit to our website.

We use persistent cookies to enable Google Analytics to differentiate between new and returning website visitors. Persistent cookies remain on your computer between visits to our website until they are removed.


Most browsers allow you to control cookies, including whether or not to accept them and how to remove them. You may set your browser to notify you if you receive a cookie, or you may choose to block cookies. Some features of our website may not function or may be slower if you refuse cookies. You may also get cookies from third parties that are linked on our website, as described below. We do not directly control these cookies.


Do Not Track

Do Not Track (DNT) is a privacy preference that users can set in some web browsers, allowing users to opt out of tracking by websites and online services. At the present time, our website does not recognize DNT.


Disclosures of Information

TMS will never sell or rent any PII about you to any third party. We do not disclose PII, except when one or more of the following conditions is true:

  • If we have your permission to disclose your PII, we may disclose it as permitted.
  • If we intend to sell any portion of our business or assets or engage in any similar transaction, we may disclose your PII in order to accomplish such sale.
  • We may need to disclose the information to one of our vendors in order to provide you the services (for example, we may provide your name and email to our vendor Constant Contact in order to send you membership information) or to fulfill our administrative objectives (for example, for customer service, fundraising or to maintain our website). Our contracts with such vendors prohibit them from using any of your personal information for any purpose beyond the purpose for which it was shared.
  • If a disclosure is necessary to satisfy any law, regulation, subpoena or government request, or in connection with litigation, we may make the disclosure. If you are a European citizen, such disclosure may include transferring information to the U.S. and outside the European Economic Area.
  • We may de-identify and aggregate your information for analytics and other purposes as described above.


Data Security

The PII you provide and we collect is stored within databases that we control through a third party hosting service. As we deem appropriate and as required by applicable law, we use security measures appropriate for the sensitivity of the PII and consistent with industry standards, including physical, organizational and technological protections, such as firewalls, to protect your PII.  However, “perfect security” does not exist on the Internet, and we cannot guarantee that third parties will not unlawfully intercept or access stored data, data transmissions or private communications while being transmitted to us over the Internet.


International Transfers

We are headquartered in the United States of America. PII may be accessed by us or transferred to us in the United States or vendors/service providers elsewhere in the world. By providing us with PII, you consent to this transfer. We will protect the privacy and security of PII according to this privacy statement, regardless of where it is processed or stored, however you acknowledge and consent to the fact that PII stored or processed in the United States will be subject to the laws of the United States, including the ability of governments, courts or law enforcement or regulatory agencies of the United States to obtain disclosure of your personal information.


For the purposes of the GDPR, we are a data controller.


Data Retention

Information that you voluntarily provide will be maintained as long as TMS deems appropriate to fulfill the purpose for which you provided the information or until you request that we remove it.


Your Ability to Delete Your Information

You may request to delete your PII and other information you voluntarily submit at any time by emailing


Third Party Websites

TMS links to various third party websites. We do not control the content or links that appear on these Sites. If you choose to access any of the external links we provide, you will be leaving our website and going to a new website. Protection of your privacy at the external sites will be governed by the privacy policies at those websites.

TMS complies with Section 508 of the Rehabilitation Act of 1973, as amended (29 U.S.C. § 794 (d)). TMS provides individuals with disabilities access to information that is comparable to that which is available to other individuals. If you use special adaptive equipment to access the web and encounter problems when using our site, please email us at, and we will attempt to provide the information to you in a suitable format. It would be helpful if you can be as specific as possible when describing the information you seek.


Electronic Communications

When you use our website, or send e-mails or other communications from your desktop or mobile device to us, you are communicating with us electronically. You consent to receive communications from us electronically, such as e-mails or notices and messages on this site. You agree that all agreements, notices, disclosures, and other communications that we provide to you electronically satisfy any legal requirement that such communications be in writing.


Children’s Online Privacy

Our website is not designed with the purpose of attracting any person under age 13. We do not knowingly collect or maintain any personal information from children under the age of 13.

In the event that we become aware that we have collected PII from any child, we will delete that information. If you are a parent or guardian and you believe that your child under the age of 13 has provided us with information without your consent, please contact us at and we will take reasonable steps to ensure that such information is deleted from our files.


Changes to this Privacy Policy

We reserve the right to modify this Privacy Policy at any time. If such modification includes any significant, material changes, we will provide notice of the update on the homepage of our website.


Governing Law and Choice of Forum

This Privacy Policy shall be governed by, and construed in accordance with, the laws of the United States and the State of Massachusetts, without giving effect to conflicts of law principles thereof. Any action at law or in equity arising from or relating to the use of this website or this Privacy Policy shall be brought exclusively in the federal or State of Massachusetts courts residing in Massachusetts. By accessing, viewing, or using the material on this website, you consent and submit to personal jurisdiction in such courts for the purposes of any action relating to this website, your access or use of this website, or this Privacy Policy, and to extra-territorial service of process.


How to Contact Us

You may contact us at