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U.S. Privacy Policy

Biogen Inc. and its affiliates (the "Company", "us", "our" or "we") respects the privacy rights of individuals and is committed to handling personal information responsibly. This Privacy Notice describes how we collect, use and process your personal information when you use or interact with us through our products, services and operations, including our websites, apps or other digital properties, that refer or link to this Privacy Notice (collectively "Services"), or we obtain and control your personal information from a third party as part of our Services. This Privacy Notices applies only to U.S. residents whose personal information is collected and used as listed under .

Residents of certain states in the U.S. may be entitled to additional disclosures and rights with respect to personal information under the laws of those states. Please see the section (which is located at the end of this Privacy Notice) to review those disclosures and learn more about your rights.

We are committed to ensuring the security of any personal information that we obtain about you through our Services. Richard Nolan serves as our interim Chief Information Security Officer and is responsible for overseeing cybersecurity within Biogen.

ADDITIONAL PRIVACY NOTICES

For the activities listed below, please instead refer to the following privacy policies available in our Privacy Center.

California job applicants: Please review our Talent Acquisition and Recruitment Privacy Notice – California Residents for details on how we process personal information that we collect during our hiring and talent acquisition process.
Washington and Nevada residents: Please see our Consumer Health Data Privacy Policy for information about how we handle your consumer health data.
Non-U.S. Residents - If you are located outside of the U.S., please visit our Privacy Center to find privacy policies and notices relevant to your country or region. You can also go to Contact Us | Biogen and select your country’s local website to see the privacy notice relevant to your country.

INFORMATION WE COLLECT; HOW WE USE YOUR INFORMATION

When you access or use our Services, Biogen may obtain or collect your Personal Information (meaning any information relating to you as an identified or identifiable natural person). Personal Information does not include certain types of information under data protection laws such as aggregated information or publicly available information from government records. Personal Information also does not include any information that is in de-identified or anonymous form, which we may use for any purpose permitted by law. When we obtain or process de-identified or anonymized data, we will not attempt to re-identify such data.

Depending on the Services that are provided to you, Biogen may collect the following categories of Personal Information, which we use and process for the business purposes listed below. Please be aware that at any given time, the Services that you obtain from us may fall under more than one of the categories below and they may also change over time (for example if you are an attendee of a Biogen sponsored event and are also a patient enrolled in our patient support services). Where we rely on your consent to collect and/or process your Personal Information, we will obtain your consent in a separate form or notice that is provided to you.

Users of our websites and digital properties

Categories of Personal Information

Purposes for Processing

Internet and other electronic activity, such as device ID, IP address, user or browsing activity.
Identifiers, such as name, e-mail address, telephone number, mailing address; written or digital signature.
Demographic information, such as zip code.
Non-precise geolocation data, such as your location based on internet activity.
Inferences drawn from other personal information, such as person's preferences, characteristics, predispositions, or behavior.

To provide Services, and respond to your questions or inquiries.
To monitor digital properties; maintain and improve performance, functionality and navigation, and analyze usage, for our sites and digital properties.
To conduct marketing and advertising activities for our products and services, including analytics to measure the effectiveness of advertising campaigns.
To ensure security of our operations, facilities, and digital properties.

Office visitors and/or participants in our events or trainings

Categories of Personal Information

Purposes for Processing

Identifiers, such as name, e-mail address, telephone number, mailing address; written or digital signature.
Audio, electronic, or visual information, such as photographs, video recordings or call recordings.
Inferences drawn from other personal information, such as person's preferences, characteristics, predispositions, behavior, or attitudes.
Other Personal Information from any communications that you send us or information collected from your interactions with us.

To provide Services such as events and training, and respond to your questions or inquiries.
To conduct marketing and advertising activities for our products and services.
To ensure security of our operations, facilities, and digital properties.

Patients and Caregivers

Categories of Personal Information

Purposes for Processing

Identifiers, such as name, e-mail address, telephone number, mailing address; written or digital signature.
Demographic information, such as gender, marital status, date of birth and zip code.
Health information such as information about physical or mental health diagnosis, conditions, or treatments, genetic information, family medical information and information about an individual’s prescribing physician or healthcare provider.
Financial and commercial information such as health insurance and benefits or financial credit information.
Audio, electronic, or visual information, such as photographs, video recordings or call recordings.
Inferences drawn from other personal information, such as person's preferences, characteristics, predispositions, behavior, or attitudes.
Protected class information, such as age, race, physical or mental disability, gender, or genetic information.
Other Personal Information from any communications that you send us or information collected from your interactions with us.

To provide Services, such as patient support services or patient access programs, and/or determine patient eligibility for these Services, and respond to your questions or inquiries. To help us improve our Services to you.
To administer and manage our engagement with you, including organizing events for patients
To conduct marketing and advertising activities and market research for our products and services.
To comply with quality, safety and regulatory requirements for our products. We may also record information about the individual reporting an adverse event of a product.

Participants in clinical research studies

Categories of Personal Information

Purposes for Processing

Identifiers such as participant ID.
Demographic information, such as gender or age.
Health information such as information about physical or mental health diagnosis, conditions, or treatments, genetic information, family medical information and information about an individual’s prescribing physician or healthcare provider.
Protected class information, such as age, race, physical or mental disability, gender or genetic information.
Other Personal Information from any communications that you send us or information collected from your interactions with us.

To facilitate enrollment in our clinical studies
To conduct clinical studies and other types of research and development for our products.
To comply with regulatory and legal obligations including safety and regulatory requirements for our products. We may also record information about the individual reporting an adverse event of a product.

Healthcare professionals and healthcare personnel

Categories of Personal Information

Purposes for Processing

Identifiers, such as name, e-mail address, telephone number, mailing address; username and password; written or digital signature.
Demographic information, such as gender or zip code.
Education information and professional or employment-related information, such as employer information, level of education, professional degrees, areas of specialty. This includes Personal Information related to your health care or medical practice, prescribing history, or participation in events or activities related to our products or disease areas.
Financial and commercial information such as financial information for transparency and transfer of value reporting requirements.
Audio, electronic, or visual information, such as photographs, video recordings or call recordings.
Inferences drawn from other personal information, such as person's preferences, characteristics, predispositions, behavior, or attitudes.
Protected class information, such as age or gender.
Other Personal Information from any communications that you send us or information collected from your interactions with us.

To provide Services to you or our patients (patient support programs or patient access programs), respond to your questions or inquiries.
To provide medical information services to consumers, patients and healthcare professionals to ensure patient safety for our products.
To administer and manage our engagement with you including organizing events and conferences.
To conduct marketing and advertising activities for our products and services including market research or surveys.
To conduct and administer our clinical studies; and register our clinical studies on government sites or our own trial link website in connection with trial transparency requirements.
To comply with our compliance obligations and quality, safety and regulatory requirements for our products. We may also record information about the individual reporting an adverse event of a product.

External Stakeholders, Business Partners and their personnel

Categories of Personal Information

Purposes for Processing

Identifiers, such as name, e-mail address, telephone number, mailing address; username and password; written or digital signature.
Education information and professional or employment-related information, such as employer information, level of education, professional degrees, areas of specialty.
Other Personal Information from any communications that you send us or information collected from your interactions with us.

To engage external stakeholders and business partners to provide consulting services to us or participate in advisory boards, congresses, or other events.
To perform due diligence to determine if we should enter or renew a business relationship.
To perform obligations under our engagements and contractual arrangements such as providing financial compensation.

In addition, we may use your Personal Information to operate our business; to ensure safety and security of our offices, facilities and digital properties; prevent or detect unauthorized activities or misuse of our products or services; and comply with laws and regulations.

Depending on the Services, we may combine or augment your Personal Information with Personal Information that we obtain from our affiliates, non-affiliated parties and other third-party sources. We may also combine information obtained from cookies and other tracking technologies, as further discussed below.

We may also use your Personal Information for another purpose that we disclose to you at the time we collect your information.

HOW WE OBTAIN YOUR PERSONAL INFORMATION

We obtain Personal Information in the following ways:

from you, your caregiver or legal representative, including when you use our Services, participate in our programs or provide permission or submit information to us; or you visit or interact with our websites, apps or digital properties.
from other companies that we collaborate with, or that we jointly research, develop, or commercialize products including co-branded products.
from vendors who collect your information in the course of providing services to us.
from professional industry databases, patient organizations or advocacy groups, government databases and other third-party sources; from public sources including public websites or social media websites.
from healthcare providers and professionals in connection with adverse events, safety reports or inquiries about a product or third parties who may report a product adverse or safety event.
from healthcare providers and professionals, health insurance companies, pharmacy providers, or related third parties to provide patient support services if you agree to participate in our patient support programs and consent to it.
in the ordinary course of operating our business and working with business partners, stakeholders and vendors to provide services to us or that we engage for consulting and advisory activities.

Please be aware that any of your information that is collected through a third-party website, or services that are not provided by us, are not covered by this Privacy Notice. You should instead consult with the relevant third party to review their privacy notices or practices.

If you elect to provide us with any Personal Information about another individual, please be aware that you are responsible for complying with all applicable data protection laws, including obtaining all consents or authorizations that may be required, to provide us with this information.

HOW WE DISCLOSE YOUR PERSONAL INFORMATION TO OTHERS

Depending on the Services provided to you, we may disclose Personal Information to the following third parties for business purposes (as described above):

Our corporate affiliates.
Service providers or vendors who we engage for services, including internet service providers, and data analytic providers.
Third parties you request us to disclose your information to, when needed to fulfil requests or provide services to you.
Advertising agencies and partners who support marketing and advertising campaigns.
Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or who jointly research, develop, or commercialize products with us, including co-branded products.
Regulatory or legal authorities in order to obtain or maintain regulatory approvals of our products, and comply with laws and regulations including safety and adverse event reporting for our products.
External advisors (accountants, auditors, and professional advisors).

If we or our affiliates are involved with another company in a merger, restructuring, reorganization, sale or transfer, disposition or other corporate transaction relating to all or part of our business, we may disclose Personal Information that we have collected about you to this other company in addition to our external advisors who are involved in these transactions.

THIRD PARTY WEBSITES AND CO-BRANDED WEBSITES

Our websites may feature links to third-party websites that we believe you might find useful and informative. We are not responsible for the privacy practices of the operators of these third-party websites. When you visit these third-party websites, please remember that you are bound by the privacy practices and policies of the third party.

Biogen may also partner with other companies to provide you with content or services on a joint or co-branded basis (with a co-branded site with both the Biogen logo and the logo of the co-branded partner displayed). Please review the individual privacy policies that are included on the co-branded sites, as these may differ in some respects from this Privacy Notice.

STORAGE & RETENTION

We provide products and services around the world. Accordingly, we store and process Personal Information on Biogen’s servers, and the servers of third parties we hire to provide our services, worldwide. These servers may be located outside the country from which you interacted with Biogen.

We retain your Personal Information for no longer than is necessary for the purposes for which it has been collected and in accordance with any specific retention periods required by law and/or our record retention policies. Our record retention policies assign retention periods to record classifications and Personal Information is retained in accordance with those retention periods. The retention periods are based on the nature of the records, their business purposes, and applicable legal obligations.

DATA SECURITY

We maintain the levels of protection of your Personal Information in accordance with applicable data protection laws and use technical resources to prevent the loss, alteration and unauthorized access or processing of your data. The security measures we use to protect Personal Information are designed to meet industry standards to prevent intruders from gaining access, however you should be aware that no method of internet transmission or electronic storage is fully secure.

CHILDREN’S NOTICE

Our websites and online services are not meant for children under 13 years old, and we do not knowingly collect personal data from children under age 16 without parental consent. Children under 13 should not give us their personal data.

CHANGES TO OUR PRIVACY NOTICE

We will only use Personal Information in the manner described in the Privacy Notice in effect when the information was collected from you. However, we reserve the right to change the terms of this Privacy Notice at any time (for example due to changes in applicable laws) by posting revisions to this website. Any updated Privacy Notice will be effective when posted. We will take adequate and reasonable action to obtain your consent if required, as a result of any such change.

SUPPLEMENTAL U.S. LOCAL PRIVACY RIGHTS

Residents of certain states may have additional rights under the laws of those states. This section supplements the information contained in our Privacy Notice and applies if you reside in those states. We adopt this notice to comply with the privacy laws of those states.

Please note that the privacy laws of your state may have slightly different definitions for certain words or terms used in our Privacy Notice. In this section, those words or terms (whether or not they are capitalized) shall have the meanings given to them in the applicable privacy laws of your state. In particular, the terms, Personal Information and Sensitive Personal Information, shall have the meanings assigned to them in the applicable privacy laws of the state.

INFORMATION WE COLLECT

Within the last twelve (12) months, we have collected the following categories of Personal Information as described in “” above.

In some cases, your Personal Information may be considered to be sensitive depending on the jurisdiction that you reside and the context in which we collect or use the information. We refer to this type of Personal Information as “Sensitive Personal Information”. Within the last twelve (12) months, we have collected the following Sensitive Personal Information depending on our relationship with you:

Personal Information that reveals genetic data.

If you are a patient, we may collect your genetic data to conduct genetic analysis or testing for research and development activities for our products or as part of our Services. If you agree to be a participant in a clinical study, we may collect and use your genetic data as described in the study. We may also use your genetic data to comply with regulatory requirements and to ensure patient safety and quality of our products.

Personal Information collected and analyzed concerning an individual's health.

As described in our Privacy Notice, we may collect health information to provide Services to you, such as patient support services and patient access services, manage our engagement with you, and/or as part of conducting research or surveys to help us develop and improve our products and services. We also collect health data to ensure patient safety and quality of our products.

We comply with all applicable laws to obtain your consent before we will collect your Sensitive Personal Information.

HOW WE USE PERSONAL INFORMATION and SOURCES OF PERSONAL INFORMATION

We collect your Personal Information from the categories of sources identified in the section, “”. We collect this Personal Information for business purposes as set forth in section, “

In some cases, your Personal Information may be considered to be Sensitive Personal Information. As discussed above, the types of Sensitive Personal Information that we may collect depends on our relationship with you, and may include Personal Information concerning your mental or physical health, including inferences about your health, and/or genetic information. We do not “sell” any Sensitive Personal Information for monetary or other valuable consideration, nor “share” it for online targeted advertising.

HOW WE DISCLOSE, SELL OR SHARE PERSONAL INFORMATION

We have collected and disclosed or shared the categories of Personal Information, as described below, in the past twelve (12) months. While we do not sell any Personal Information to third parties for monetary or other valuable consideration, certain of our practices could be considered “sharing”, or online targeted advertising, under the definitions of specific U.S. state laws.

Categories of Personal Information	Categories of third parties with whom we may disclose Personal Information for business purposes	Categories of third parties with whom we may share Personal Information for targeted advertising
Identifiers	Our corporate affiliates Service providers and vendors Data analytic providers Advertising agencies and partners Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Data analytics providers Advertising agencies and partners
Demographic information	Our corporate affiliates Service providers and vendors Data analytic providers Advertising agencies and partners Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Not shared
Health information (Sensitive Data)	Our corporate affiliates Service providers and vendors Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Not shared (unless you consent)
Education information and professional or employment-related information	Our corporate affiliates Service providers and vendors Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Not shared
Internet and other electronic activity	Service providers and vendors Data analytic providers Entities to which you have consented to the disclosure Regulatory or legal authorities	Data analytics providers Advertising agencies and partners
Other audio, electronic, or visual information (not including those identified elsewhere)	Our corporate affiliates Service providers and vendors Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Not shared
Inferences drawn from other personal information	Our corporate affiliates Service providers and vendors Data analytic providers Advertising agencies and partners Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities	Not shared
Financial and commercial information	Our corporate affiliates Service providers and vendors Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Not shared
Protected class information (Sensitive Data)	Our corporate affiliates Service providers and vendors Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors Third parties in connection with a corporate transaction	Not shared
Other Personal Information	Our corporate affiliates Service providers and vendors Collaborators, partners or other companies with whom we have contractual data sharing arrangements, or we jointly research, develop, or commercialize products Entities to which you have consented to the disclosure Regulatory or legal authorities External advisors	Not shared

We do not have actual knowledge that we sell or share for targeted advertising any Personal Information of individuals that are under 16 years of age.

We also do not process Personal Information for purposes of profiling in furtherance of decisions that produce legal or similarly significant effects (which means a decision that results in the provision or denial of financial or lending services, housing, insurance, education enrollment or opportunity, criminal justice, employment opportunities, health-care services, or access to essential goods or services).

YOUR PRIVACY RIGHTS

This section describes certain rights that are available to you under your state law and explains how to exercise those rights. Note that the specific rights that may be available to you may depend on the state law where you are a resident.

- You have the right to confirm whether we are processing your personal information.
- You have the right to request that we disclose certain information to you about our collection and use of your personal information and a right to request the specific pieces of personal information we collected about you (also called a data access request). This Request to Know covers:
- the categories of personal information that we have collected about you;
- the categories of sources from which your personal information is collected;
- the business or commercial purpose for collecting, or “sharing” for online targeted advertising, your personal information;
- the categories of personal information that we have disclosed, “shared” for online targeted advertising, and the categories of third parties with whom we have disclosed your personal information or “shared” it for online targeted advertising.
– You have a right to request a copy of personal information that we maintain about you, where technically feasible and in readily usable format that allows you to easily transmit to another company. This right however may be subject to certain exceptions.
- In some states, you may have the right to obtain a list of specific third parties to which we have disclosed personal information. For a list of the specific third parties to whom we have disclosed personal information, please submit a request via the Data Subject Request portal linked below. Please note, some areas also allow you to obtain a list of the categories of third parties to which we have disclosed personal information. You can find that information in the table above under the “How We Disclose, Sell or Share Personal Information” section.
You have the right to request that we delete any of your personal information that we collected from you and retained, subject to certain exceptions.
You may request that we correct any inaccurate personal information from our records.
You may have the right to request to opt-out of the sharing for targeted advertising of personal information (if applicable). Please note that after you opt-out of receiving targeted advertisements, your information may still be collected through cookies on our websites for certain purposes not related to targeted advertising. We recognize universal opt-out preference signals such as Global Privacy Control (GPC) that permits users to exercise opt-out of sharing their Personal Information for online targeted advertising. Please be aware that, opt out preference signals may be used and recognized only by certain website browsers or devices that support capabilities. For more information on how we use data collection technologies, including how to change or control your preferences, please refer to our Cookies and Other Technologies Policy.
If you have signed up to receive marketing or promotional emails from Biogen about our products, and you no longer wish to receive these emails, you can unsubscribe by clicking on the “Unsubscribe” link provided within the e-mail, or submit a request to our Data Subject Request portal linked below. You can also send an e-mail with the word “Unsubscribe” to to initiate your request. You may opt out of text messages by following instructions in the text message.
You have a right not to be subject to discriminatory treatment for the exercise of your privacy rights.

EXERCISING YOUR PRIVACY RIGHTS

To exercise the rights described above, please submit a request to us online at our Data Subject Request portal, contact us toll-free at 1-877-318-6245, or email us at .

When you submit a request to us, you will be asked to affirm your state of residency and to indicate whether the request is on your behalf or for someone else. If you make a request related to Personal Information about you, we will need to verify your identity. For instance, we may request that you match specific pieces of information you have provided us, or provide a power of attorney or a signed declaration that you are the individual whose personal information is the subject of the request. For requests related to particularly sensitive information, we may require additional proof of identification. If you make a request through an authorized agent, we will require written proof that the agent is authorized to act on your behalf. We will use any information that we request to verify your identity only for these purposes.

We will process your request within the time provided by applicable law. If we are not able to comply with your request, you will be provided with the reasons for such decisions. You may be entitled to appeal our decisions and can do so by following the instructions provided in the correspondence we send to you communicating our decision. You may also be entitled to lodge a complaint with regulators.

CALIFORNIA’S SHINE THE LIGHT LAW

Under California’s “Shine the Light” law (California Civil Code §1798.83), businesses are required to make certain disclosures to California residents about how they disclose personal information to third parties for the third parties’ direct marketing purposes. While we do not disclose your personal information to third parties for third parties’ direct marketing purposes, as discussed above, we do engage in targeted advertising.

CONTACT US

If you have any concerns about the way your Personal Information has been collected or handled by Biogen, or any queries regarding this Privacy Notice, you can contact Biogen’s Global Privacy Office at .

You can also write to us at the following address:

Global Privacy Office
Biogen MA Inc.
225 Binney Street
Cambridge, MA 02142
USA

Updated as of May 1, 2026

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This Is PNH Support App – Privacy Policy

Thank you for downloading the This Is PNH Support application (hereinafter referred to as the “App”), which offers comprehensive administration and adherence support to patients with paroxysmal nocturnal hemoglobinuria (hereinafter referred to as “PNH”).

This App has been developed and is maintained, by Squint Metrics (https://www.squintmetrics.com/), for and on behalf of Apellis Pharmaceuticals, Inc., (hereinafter referred to as “Apellis”, or “we”, “us”, “our”). Apellis Pharmaceuticals, Inc., 100 5th Avenue, Waltham, MA 02451, USA, Phone: + (617) 977-5700 | website: https://apellis.com/ | email: info@apellis.com. Kinvey Inc., https://www.progress.com/kinvey, a BaaS provider, is used by Squint Metrics for partial data storage management using Amazon Web Services to set up, use, and operate a cloud back-end for the App.

The privacy and the security of your personal data is important to us. This Privacy Policy (hereinafter referred to as the “Policy”) will explain, in a clear and comprehensive way to you, how and why we collect, store, disclose, and use your personal information (hereinafter referred to as “Personal Data”), as well as describe the controls and options at your disposal in terms of time and the way you choose to share your personal data.

For more information on how we handle Personal Data, please read our privacy policy here / data protection notice: https://apellis.com/privacy-policy/.

Your personal data

Personal Data you provide

The Personal Data you will need to provide to the App for registration purposes will be the following:

Name
Surname
Email Address
ZIP code

After downloading the App, you will be required to provide the above data to create an account.

Such data are provided directly by you, based on our agreement for the use of the App, in order to provide you with the App customer services (such as App’s functionality and for confirming your requests on the exercise of your privacy rights).

The Personal Data, which you might provide through the use of the App will be the following:

Survey data (questionnaires’ responses) by completing the Questionnaire Module;
Health data (medical history, e.g., diagnosed PNH);
Symptom data (self-assessment of your mood and health condition, e.g., fatigue, weakness headache, pain etc.) by completing the Symptom Tracker Module;
Lab data (diagnosis, medical results, e.g., hemoglobin, LDH, bilirubin, reticulocyte count) by completing the Lab Values Module;
Wearable data (steps, activity, sleep, sleep quality, heart rate) by connecting to the wearable devices (Wearable Connect Module); and
Data you provide us when you contact us for support purposes via Settings and Support Screens.

The above data are provided directly by you, based on your consent, which is freely revoked. You are not obliged to provide your Personal Data, however, choosing not to, may make the delivery of several services not possible.

Please note that when you connect to a wearable fitness device of your choice, i.e., Google or Apple Healthkit or Fitbit, you will need to follow the respective steps required to sync your data with the App, so that you grant the required permission and choose what categories of data from the wearable fitness device you would like to share with the App accordingly. Please note that we have no control over the contents of those wearable fitness devices and you acknowledge that we are not responsible for the accuracy, copyright compliance, legality, decency, or any other aspect of the content of such wearable fitness devices. If you decide to connect to a wearable fitness device, you do so entirely at your own risk and subject to the terms and conditions of use for such wearable fitness devices.

Aggregated data automatically collected

Other data that might be collected using the App via Android/iPhone Advertising ID (anonymous cookies provided to Google from ad tracking tags) are the following:

Gender
Age: Identifies users by six categories: 18-24, 25-34, 35-44, 45-54, 55-64, and 65+
Geography (country)
Language
Interests: Lists the interests of the user (e.g., “Arts & Entertainment, Games, Sports”)
Device Information
App store/App version

Regarding these data, which will be collected via Android/iPhone Advertising ID, Apellis will receive only aggregated data on usage statistics, that will not include any of your Personal Data nor will Apellis be able to identify any App users from the aggregated data reports.

All the above-mentioned data categories collected through the App will be provided to Apellis deidentified and will not contain personally identifiable information.

This Privacy Policy does not cover the Personal Data that will be potentially collected and processed by Google’s Play Store or App Store, as each application store may have its own terms and conditions to which you must agree before downloading apps.

For which reason your Personal Data will be used

Any Personal Data collected or stored on the PNH App will be used for the following purposes:

To create your account;
To communicate with you for information about updates, features, or issues related to the App, as well as for accounts verification in order to triage reported issues;
To provide you with the desired services, such as enabling support and guidelines regarding your condition;
To understand how you access and use the App to ensure its technical functionality, analyze the use of the application by you;
To develop similar new products and services/applications for future use by you and others.

Sharing Personal Data

Your Personal Data maybe be disclosed to other Apellis affiliated entities and certain third parties (as Squint Metrics) who provide us with various business services, such as but not limited to: professional services, including information technology services and related infrastructure, customer service, email delivery, auditing and other similar services as well as to business partners and collaborators.

We will not sell or otherwise disclose your Personal data without your consent, except where such disclosure is reasonably necessary:

To conduct normal business operations in accordance with all applicable data protection and privacy laws;
To comply with applicable laws and regulations, including laws outside your country of residence; and
To protect our rights and pursue available legal remedies.

All Apellis affiliates and any third-party service providers are only permitted to use such data for the purposes of performing services for and on our behalf and in accordance with all applicable data protection laws.

How long we will keep your Personal Data

We will keep your Personal Data only so long as we need it to provide the relevant services to you and to fulfill the purposes described in this Policy. This is also the case for anyone that we share your data with and who carries out services on our behalf. When we no longer need to use your data, we will delete the Personal Data upon your request to remove your account, or in the event that the program is shut down.

Your Privacy Rights

You have the right to request from us to:

provide you with further details on the processing of your Personal Data;
provide you access to your Personal Data that we hold about you and copies thereof;
update any inaccuracies in the Personal Data we hold that is demonstrated to be inaccurate or incomplete;
delete any Personal Data that we no longer have a lawful basis to use;
provide you or a third party, with a copy of your data in a digital format (data portability);
stop a particular processing when you withdraw your consent;
object to any processing based on the legitimate interests or public interest to process Personal Data, unless our reasons for undertaking that processing outweigh any prejudice to your data protection rights; and
restrict certain aspects of the processing of your Personal Data.

If you wish to exercise one of the above mentioned rights, please send us your request in writing to the following address: Apellis Pharmaceuticals, Inc., 100 5th Avenue, Waltham, MA 02451, USA, Phone: + (617) 977-5700 | website: https://apellis.com/ | email: info@apellis.com, or send us your request via email at privacy@apellis.com.

Security

The data contained within the PNH App is stored on your smartphone as well as in the Kinvey Inc. servers located in US, using Amazon Web Services.

To access the App you will need to use a username and a password. The password protects your user account, so we recommend that you keep it secure and private and you do not share it with others.

Changes to this Privacy Policy

From time to time, we may update this Privacy Policy. Any changes will become effective when we post the revised Privacy Policy in the App. Your use of the App following these changes means that you are informed of the revised Privacy Notice. This Privacy Notice was last updated on April 30, 2021.

Contact Us

If you have any questions, comments or suggestions about this Privacy Policy or our privacy practices, please contact us at: privacy@apellis.com or contact Apellis Assist via the App.

For any technical issues, tap to open and draft an email that will be sent to Squint Tech support system, via the Contact App Technical Support.

This Is PNH Support Application – Terms & Conditions

Welcome to the This Is PNH Support Application. The following terms and conditions (hereinafter referred to as “Terms and Conditions” or “Terms”), which constitute the agreement between you (hereinafter referred to as “you”, “your” or “User”) and Apellis Pharmaceuticals, Inc., (hereinafter referred to as “Apellis”, “we”, “our” or “us”), the owner of the This Is PNH Application (hereinafter referred to as the “App“) that offers an adherence support to the patients of Paroxysmal Nocturnal Hemoglobinuria (hereinafter referred to as “PNH”) in United States.

The App is owned and managed by Apellis Pharmaceuticals, Inc., a company established in the US, with its registered office at 100 5th Avenue, Waltham, MA 02451, USA, https://apellis.com/. The App has been developed and is maintained, for and on behalf of Apellis, by a third-party application service provider, Squint Metrics, 2 Hudson Place, Suite 401, Hoboken, NJ 07030, https://www.squintmetrics.com/.

The App is available as a mobile app for free download via your mobile device. The App is intended to be used solely by patients with PNH to track and record, among other things, the changing nature of their symptoms and its impact on their overall well-being and lifestyle. More specifically the patients have access to the following features:

PNH Questionnaires
Symptom Tracker
Lab Values
Wearable Connect and Support

You must be at least an 18-year-old patient with PNH in the US as per above, if you wish to use the App.

Your use of the full functionality of the App (including setting up a User account) requires your agreement to be bound by these Terms and Conditions. By clicking on the “Accept” button below and by continuing to use the App, you acknowledge that you have read, understood and agreed to be bound by these Terms and Conditions. If you do not agree to these Terms and Conditions, or if you are under the age of eighteen (18), you shall not create a User account on the App, use or access any part of the App.

Contract language is English.

These Terms and Conditions apply to the use of the App and contain the terms governing your use of the App. It is important that you have read and understood these Terms and Conditions of use, together with our Privacy Policy, carefully and completely before using the App.

We reserve the right to make changes to these Terms and Conditions. When prompted to download any update to the App from the Application Store upon such update becoming available, you must check the terms and conditions applying to such update. Any modification to these Terms and Conditions shall become binding when published.

PURPOSE AND CONTENTS OF THE APP

The App does not pursue a medical purpose. It is designed to keep a record of User symptoms and how they change over time and their impact on User well-being and lifestyle. The App is not intended as a disease monitoring tool or as a symptoms checker, but as a lifestyle/guidance app that allows patients of PNH to better manage their disease and track their progression, symptoms, labs, and quality of life over time. To have your symptoms checked, please talk to your healthcare professional. Furthermore, the App does not make any medical diagnoses. Please seek the advice of a medical professional if you are concerned about your health. You should never disregard a doctor’s professional advice or cancel an appointment with a doctor because you are relying on information you have reported within the App.

In case of an emergency, you should contact your healthcare professional or dial 911, if it is possible, via your device.

The contents of this App, including without limitation, all data, information, text, graphics, links and other materials are provided as a convenience to you as an App User on an “as is” basis and are meant to be used for informational purposes only. The contents of this App are not intended to be a substitute for, or to override, any professional medical advice or the diagnosis, prevention, monitoring, prediction, treatment or alleviation of diseases, injuries or disabilities. While you can use the contents of this App as a written diary/log of your symptoms and feelings about your health, the App is not intended to provide information that is used to take decisions with diagnosis or therapeutic purposes.

While every effort has been made to ensure that the information provided in the App is up to date and accurate, the App must not be considered complete or comprehensive in relation to the treatment based only on the information you logged into the App. Use of the App and reliance on any information provided in this App or, where applicable, resources or websites linked to this App are done solely at your own risk and always in compliance with these Terms and Conditions.

DOWNLOADING AND INSTALLING THE APP

Before using the App, you will first need an Apple ID or a Google account. You can then download the App from the Apple App Store or Google Play Store (hereinafter referred to, either individually or collectively, as “App Store”) to your mobile device or tablet.

You acknowledge that these Terms and Conditions are not similar with the App Store from which you have downloaded the App. Each Application Store may have its own terms and conditions to which you must agree before downloading apps from it. You agree to comply with, and your license to use the App is conditional upon your compliance with, such App Store terms and conditions. To the extent that terms and conditions from such App Stores are less restrictive than, or otherwise conflict with, these Terms and Conditions, the more restrictive or conflicting terms and conditions in these Terms and Conditions apply.

CREATING A USER ACCOUNT

After downloading the App from the relevant App Store and being a patient of PNH, you are going to provide your email as a username and create a password for your account registration (hereinafter referred to as “User Account”). Registration constitutes a binding offer of the User to be bound by these Terms and Conditions.

We will save the contractual text of the agreed Terms and Conditions. Beyond this, we do not assume any obligation with regard to the availability of the agreed terms to the User.

We advise our Users to only use “strong” passwords for their User Account (strong passwords are passwords consisting of a combination of numbers, both upper- and lower-case letters, digits and special characters). When you register your User Account or input other information, you are also declaring that the information is correct and complete. In the event of any change in the information at a later date, you declare that you will update the App accordingly.

You are responsible for maintaining the confidentiality of your login information and any activity in your User Account. Should you have the suspicion that your User Account may have been misused, you should delete the App.

YOUR PRIVACY

Protecting your privacy and any data relating to you (hereinafter referred to as “Personal Data”) is a priority for us. For that reason, any of your Personal Data generated by the use of the App will only be collected, stored and processed by us in compliance with applicable data protection legislation. Please read our Privacy Policy to understand how and for what purposes we collect and use your information to provide you with the best possible service.

GRANT AND SCOPE OF LICENSE

This App and the contents are protected by copyright, trademark and other proprietary rights of Apellis or third parties. It is for your personal, non-commercial use only. Except as expressly permitted in these Terms and Conditions, no portion of the App or the content, including, without limitation, trademarks, trade names and logos or any other intellectual property rights, may be reproduced in any form, or by any means, without prior written permission from us or applicable third party. Any use not expressly permitted by these Terms and Conditions such as unauthorized downloading, redistribution, retransmission, copying, modification or commercial use of the content is a breach of these Terms and Conditions and may be a violation of applicable copyright, trademark, and other laws as well as could result in legal action.

Subject to the preceding paragraph, we grant you a limited license to use this App for the duration of the agreement solely for your personal, non-commercial use. We may revoke this license at any time at our sole discretion.

OPERATING SYSTEM REQUIREMENTS

This App requires an iPhone or Android mobile phone device with a minimum of 32GB of memory and the iOS or Android operating system (iOS 10+, Android 5+).

UPDATES TO THE APP AND CHANGES TO THE SERVICE

From time to time we may automatically update the App to improve performance, enhance functionality, reflect changes to the operating system or address security issues. Alternatively, we may ask you to update the App for these reasons.

If you choose not to install such updates or if you opt out of automatic updates you may not be able to continue using the App.

The App will always match the description of it provided to you when you downloaded it.

CHANGES TO THESE TERMS

We may need to change these terms to reflect changes in law or best practice or to deal with additional features that we introduce. We will notify you of a change when you next start the App.

YOUR USE

You may only use the App and any information in or downloaded from the App in compliance with these Terms and Conditions, applicable laws and regulations and you may not violate the rights of others. In particular, you must:

not use the App in any unlawful manner, for any unlawful purpose, or in any manner inconsistent with these terms, including with the purposes set out in “PURPOSE AND CONTENTS OF THE APP” or act fraudulently or maliciously, for example, by hacking into or inserting malicious code, such as viruses, or harmful data, into the App, or any operating system;
not infringe our intellectual property rights or those of any third party in relation to your use of the App (to the extent that such use is not licensed by these terms);
not transmit any material that is defamatory, offensive or otherwise objectionable in relation to your use of the App;
not use the App in a way that could damage, disable, overburden, impair or compromise our systems or security or interfere with other users; and
not collect or harvest any information or data or our systems or attempt to decipher any transmissions to or from the servers running the App.

DISCLAIMER OF WARRANTY

We do not guarantee or warrant the availability, quality, accuracy, completeness, timeliness, appropriateness or suitability of the information on the App or of any functionality or services referenced on the App. We assume no obligation to update the information, functions or services in the App, to correct any errors or fix bugs. The information and the App may be changed from time to time without notice.

We disclaim all warranties, representations, conditions regarding use of the App or the information, including all implied warranties of merchantability, fitness for a particular purpose, non-infringement, whether expressed or implied, or arising from a course of dealing, usage or trade practice.

DISCLAIMER OF LIABILITY

We assume no liability for the delay, failure, interruption, corruption, or loss of any data transmitted to this App, and do not warrant that the App is free of infection, viruses, worms, or codes that manifest contaminating or destructive properties.

We, and any other parties involved in the creation, production or delivery of the App, including the provision of information, disclaim any responsibility and shall not be liable for damages, claims, liabilities, costs or obligations including any direct, indirect, special, incidental or consequential damages whatsoever and however caused, arising out of or in connection with the use or misuse of the App or the information whether such damages arise in contract, tort or negligence.

We do not exclude or limit in any way our liability to you where it would be unlawful to do so. This includes liability for death or personal injury caused by our negligence or the negligence of our employees, agents or subcontractors or for fraud or fraudulent misrepresentation.

In relation to the Wearable Connect and Support feature of the App, we have no control over the contents of those wearable fitness devices and you acknowledge that we are not responsible for the accuracy, copyright compliance, legality, decency, or any other aspect of the content of such wearable fitness devices. If you decide to connect to wearable fitness device, you do so entirely at your own risk and subject to the terms and conditions of use for such wearable fitness devices.

INDEMNIFICATION

You agree to indemnify, defend, and hold harmless Apellis from any liability, loss, claim, and expense (including reasonable legal fees) related to your violation of these Terms and Conditions.

TERMINATION

These Terms and Conditions, which constitute the agreement between you and Apellis, are effective upon your acceptance thereof and shall continue until terminated by you or Apellis. This agreement will terminate immediately and without additional notice in the event that you breach or fail to comply with any term within these Terms and Conditions. If this agreement terminates, you must discontinue your use of the App and uninstall and destroy any and all material associated with the App.

GOVERNING LAW

This App is owned and managed by Apellis, which is located in the USA. Any matter arising in connection with this App shall be governed by the laws of Massachusetts and shall be subject to the exclusive jurisdiction of the competent courts in Massachusetts.

Each of the paragraphs of these terms operates separately. If any court or relevant authority decides that any of them are unlawful, the remaining paragraphs will remain in full force and effect.

Even if we delay in enforcing this contract, we can still enforce it later. If we do not insist immediately that you do anything you are required to do under these terms, or if we delay in taking steps against you in respect of your breaking these Terms and Conditions, that will not mean that you do not have to do those things and it will not prevent us taking steps against you at a later date.

COMPLETE AGREEMENT

Except as expressly provided, these Terms and Conditions and the Privacy Policy constitute the entire agreement between you and Apellis with respect to the use of this App.

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