(Last modified on February 10, 2022)


Welcome to the Better Living With PNH website at https://betterlivingwithpnh.com/ (the “Website”).  The Canadian Association of Paroxysmal Nocturnal Hemoglobinuria (the “PNHCA”), the non-profit that owns and operates the Website, is pleased that you have chosen to visit us and use the Website, and possibly sign up to receive the “Better Living With PNH, Day by Day” guide (the “Guide”).

The PNHCA takes your privacy and security of personal data very seriously. We have provided and will continue to provide a secure environment and this strict Privacy Policy (the “Policy”) that describes the limited ways your information is used and the limited access to such information. We ask that you read it carefully.

Key Elements of this Policy

Here are the key elements of this Policy so you can know the important parts right away to make an informed decision about your consent for our collection, use and disclosure of your personal data. By submitting any personal data to us via any means, you consent to such collection, use and disclosure. You can find the details in the rest of the Policy.

Personal data we collect from you but only with your consentWhat we do with itThird parties we share it with
Contact Information – your name, email address, and countryCommunicate with you and send you the GuideCompanies that provide our communications services such as MailChimp

Some Terms

Before we get started with the details, here are a few terms we think you should know as you read this Policy.

Data Protection Laws” refers to the laws that are designed to protect your personal data and privacy in the place where you live. These include: (1) the “GDPR”, the European Data Protection Law which stands for “General Data Protection Regulation”, with the official name Regulation (EU) 2016/679 of the European Parliament and of the Council; (2) “PIPEDA” (Personal Information Protection and Electronic Documents Act), which is the Canadian Data Protection Law that applies to our activities in Canada; (3) the California Consumer Privacy Act (“CCPA”) which applies to our activities in the United States in certain circumstances; and (4) the “UK GDPR” which applies to our activities in the United Kingdom; please note that when this Policy refers only to the “GDPR”, this includes the UK GDPR as applicable. The PNHCA is committed to adhering to all these applicable Data Protection laws.

Personal data” – this is information we collect from you or about you and which is defined in the GDPR as “any information relating to an identified or identifiable natural person.” It can be as simple as your name or your email, or something more complicated like an online identifier (usually a string of letters and / or numbers) that gets attached to you. Under PIPEDA and the CCPA, the equivalent concept is “personal information”, which is roughly the same. Any mention of “personal data” in this Policy shall also mean personal information.

About Us and Contacting Us

The PNHCA is a Canadian federally-incorporated not-for-profit corporation located in the Province of Quebec, Canada, with an office at the address listed below. Where this Policy refers to “the PNHCA”, it may refer to the PNHCA and / or its officers, directors, employees, agents, partners, principals, representatives, successors and assigns (collectively “Representatives”), depending on the context. Any reference to “we”, “our”, or “us” in this Policy shall also refer to the PNHCA. In this Policy a Website visitor or user may be referred to as “you”.

Under the GDPR, the PNHCA is a “data controller”. That means we collect personal data directly from you and determine the purpose and means of “processing” that data. “Processing” is a broad term that means collection, use, storage, transfer or any other action related to your personal data; it is used in this Policy in that way.

If you want to ask us anything about what’s in this Policy, or anything else privacy- or data- related, or exercise any of your available privacy rights, you can contact:

PNHCA Privacy Officer


PNHCA Privacy Officer
1321 Sherbrooke St. West, Suite A-41
Montreal, QC
H3G 1J4

Your Rights

You have the following rights regarding your personal data held by the PNHCA, and other privacy rights. Please note that not necessarily all of these rights may be available to you; this depends on the Data Protection Laws where you are located that apply to you. These rights may be exercised without affecting any prices or costs charged by the PNHCA (though please note at this time we do not charge anything, and we do not expect to). Please note that exercising certain of these rights may affect your ability to use some or all of the Website or related activities, like receiving the Guide.

If you wish to exercise any of these rights, please contact our Privacy Officer at the contact information above, or refer to certain relevant sections further in this Policy.

Personal Data Collected from You and What We Use It For

In the table below, please find all the personal data we may collect from you directly, what we use it for, and the legal basis under the GDPR for us having and processing this personal data. Under PIPEDA, the legal basis is your informed consent, and by submitting this personal data you acknowledge having granted this consent to the PNHCA.

Personal data categoryPersonal data processedWhat we use it for
(the “purpose” of processing)
Legal basis for processing under the GDPR
Contact informationYour name, email address, and countryTo communicate with you and send you the GuideYour consent in giving us this information

Personal Data Collected About You from Third Parties and What We Use It For

The PNHCA does not collect personal data about you from third parties. Exceptionally, to the extent that analytics or advertising identifiers are generated from third parties, these may be considered personal data collected from third parties, and you can find details about that further below in this Policy.

Sensitive Personal Data

We do not collect any of what the GDPR considers sensitive personal data from you, unless you voluntarily submit it to us via email or other method, which we encourage you not to do.

Who We Transfer Your Personal Data To

We routinely share some of your personal data with certain types of third parties who are identified in the table below along with what they do with it. Some of those third-party recipients may be based outside your home jurisdiction. If you are in the European Economic Area or the U.K. — please see the “Transfer of Your Personal Data Outside of the European Economic Area” further down in this Policy for more information including on how we safeguard your personal data when this occurs.

We will share personal data with law enforcement or other public authorities if: (1) we are required by applicable law in response to lawful requests, including to meet national security or law enforcement requirements; (2) if we believe it is necessary in order to investigate, prevent, or take action regarding illegal activities, fraud, or situations involving potential threats to the safety of any person; or (3) if we believe it is necessary to investigate, prevent, or take action regarding situations that involve abuse of the Website infrastructure or the Internet in general (such as voluminous spamming or denial of service attacks).

We may also share personal data: (1) to a parent company, subsidiaries, joint ventures, or other companies under common control with the PNHCA (in which case we will require such entities to honour this Policy); (2) if the PNHCA merges with another entity, is subject to a reorganization, sells or transfers all or part of its business or assets (in which case we will require such entity to assume our obligations under this Policy, or inform you that you are covered by a new privacy policy).

We will never share your personal data with other third parties except under these circumstances. We do not sell or rent your personal data to any third party for direct marketing purposes or any other purpose.

Personal data categoryWho we transfer it toWhat they do with it
Contact informationCompanies that provide email services specifically MailChimpSend you emails and the Guide, as further detailed in the Email Communications section below
Contact informationCompanies providing technical infrastructure for the Website, specifically SiteGroundStore the information
Advertising identifiersCompanies that provide online advertising networks, like FacebookShow you ads for the Website when you are on the internet, as further detailed in the PNHCA Advertising section below
Analytics identifiers and related information including IP addressCompanies that provide data analytics for the Website, such as Google AnalyticsProvide us with analytics about Website users and how the Website is used, as further detailed in the Limited Gathering of Information section below

Email Communications and Compliance with Anti-Spam Laws

The PNHCA uses MailChimp to manage our mailing lists and send out the Guide (the “Email Service Provider”). Personal data is transferred to the Email Service Provider in order to manage the mailing lists and for the Guide to be sent out properly by email. Your Contact Information is only used to send out emails; the Email Service Provider does not use this personal data for any other purpose, and will not transfer or sell your personal data to any other third party.

You may unsubscribe from the mailing list and stop receiving the Guide at any time, by following the link at the bottom of PNHCA emails.

The PNHCA’S practices in regards to its email are designed to be compliant with anti-spam laws, including but not limited to the law unofficially called “CASL”, or Canada’s Anti-Spam Law (S.C. 2010, c. 23). If you believe you have received email in violation of these laws, please contact our Privacy Officer using the contact information further up in this Policy.

PNHCA Advertising and Opting Out

The PNHCA is continuously evaluating and modifying our use of various advertising networks, which may change from time to time. In this section you will find all the advertising networks that the PNHCA currently uses and instructions for opting out of them. We will update this policy if we use additional advertising networks.  

The PNHCA may advertise using Facebook Custom Audience, to display advertisements to you on Facebook or in Facebook Messenger that will be of interest to you, and by visiting the Website you consent to this use. Facebook may collect or receive information from the Website and other applications and websites and use that information to provide measurement services and targeted ads. If you do not want to receive such Facebook advertisements, you can opt-out of such advertising by adjusting your Ad Preferences settings while logged in to Facebook.

Limited Gathering of Information for Statistical, Analytical and Security Purposes

The PNHCA automatically collects certain information using the “Third-Party Analytics ProgramsGoogle Analytics, and Polylang to help us understand more about our site visitors and users and how they use the Website, but none of this information identifies you personally, except via an alphanumeric string. For example, each time you visit the Website, we automatically collect (as applicable) your IP address, browser and computer or device type, access times, the web page from which you came, the web page(s) or content you access, and other related information. We use information collected in this manner only to better understand your needs and the needs of Website visitors and users in the aggregate, and to serve you content in the appropriate language. The PNHCA also makes use of information gathered for statistical purposes to keep track of the number of visits to the Website, the specific pages on the Website, and users with a view to introducing improvements to the Website and our activities.

Your IP address and other relevant information we collect using the Third-Party Analytics Programs may be used in order to trace any fraudulent or criminal activity.

The PNHCA uses tracking technology (“cookies” and related technology such as tags, pixels and web beacons) on the Website and by visiting or using the Website you agree to their use. Cookies are small text files placed on your computer or device when you visit a website, in order to track use of the site and to improve the user experience by storing certain data on your computer.

Specifically, we use cookies and related technologies for the following functions:

Your browser can be set to refuse cookies or delete them after they have been stored. You can refer to your browser’s help section for instructions, but here are instructions for the most commonly-used browsers and operating systems:

Please note that deleting these cookies may reduce your user experience on the Website. Furthermore, deleting cookies may prevent certain functions from working at all.

How We Protect Your Personal Data

We have implemented very strict technical and organisational procedures for ensuring that, by default, only personal data which are necessary for each specific purpose of the processing are processed by us. These procedures prevent your personal data from being lost; or used or accessed in any unauthorised way.

We also have procedures in place to deal with any suspected data security breach. We will notify you and any applicable supervisory authority of a suspected data security breach where the Data Protection Laws requires us to do so, and within the time frame required by the applicable Data Protection Law.

The PNHCA uses only industry best practices (physical, electronic and procedural) in keeping any data collected (including personal data) secure. In addition, we use third-party vendors and hosting partners to provide the necessary hardware, software, networking, storage, and related technology required to operate the Website, and these third parties have been selected for their high standards of security, both electronic and physical. For example, the PNHCA uses SiteGround, who have very strict security protocols, for hosting of the Website and related data, and storage of data including personal data.

Finally, all information, including personal data, is transferred with encryption using Secure Sockets Layer (“SSL”) or Transport Layer Security (“TLS”), robust security standards for Internet data transfer and transactions. You can use your browser to check The PNHCA’S valid SSL security certificate on the Website.

Transfer of Your Personal Data Outside of the European Economic Area (EEA) and the U.K.

For our European users, we endeavour to keep your personal data inside the EEA or the U.K. (as applicable). However, certain of our data processors (and the PNHCA) are in other countries where your personal data may be transferred. However, these countries are limited to countries with particular circumstances that protect your data, specifically:

That’s it! You have the right, however, to refuse to have your data transferred outside the EEA or the U.K. Please contact our Privacy Officer to make that request. Please note that making this request may prevent you from being able to use a portion or all of the Website, or to receive the Guide.

Supervisory Authorities and Complaints

If you are in the EEA or U.K., under the GDPR you have the right to make a complaint to the appropriate supervisory authority. If you are not satisfied with the response received or the actions taken by our Privacy Officer, or if you would like to make a complaint directly about the PNHCA’S data practises, we invite you to contact the supervisory authority in your country. For example, if you are in the U.K., you should contact the Information Commissioner’s Office who is the supervisory authority. You can reach them in a variety of ways, including by phone (0303 123 1113 in the UK) and mail (Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF). If you are in France, you should contact the Commission Nationale de l’Informatique et des Libertés who is the supervisory authority there. Their contact information can be found here.

The full listing of all Data Protection Authorities (the supervisory authorities) across the EEA can be found here.

If you are in Canada and you are not satisfied with the response received or the actions taken by our Privacy Officer, you can make a complaint to the Office of the Privacy Commissioner of Canada. Instructions on how to do so can be found on their website.

Data Retention

Your personal data will only be kept for as long as it is necessary for the purpose needed for that processing. For example, we will only retain your Contact Information for as long as you continue to consent to receive communications from us, including the Guide.

Automated Decision-Making

The PNHCA does not use any automated decision-making processes in providing the Website.

Children’s Privacy Statement

The Website is not intended for children under the age of 16. We do not knowingly collect any personal data from a child under 16. If we become aware that we have inadvertently received personal data from a person under the age of 16 through the Website, we will delete such information from our records.

Changes to This Privacy Policy

The date at the top of this page indicates when this Policy was last updated. Every now and then, we will have to update this Policy, and we will update it no less than once every 12 months. You can always find the most updated version at this URL, and we will always post a notice on the Website if we make significant changes, and / or email you if you have signed up for the Guide.

© The Canadian Association of Paroxysmal Nocturnal Hemoglobinuria 2022