Privacy policy

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 (, 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: | email: Kinvey Inc.,, 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:

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:

  1. Name
  2. Surname
  3. Email Address
  4. 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:

  1. Survey data (questionnaires’ responses) by completing the Questionnaire Module;
  2. Health data (medical history, e.g., diagnosed PNH);
  3. Symptom data (self-assessment of your mood and health condition, e.g., fatigue, weakness headache, pain etc.) by completing the Symptom Tracker Module;
  4. Lab data (diagnosis, medical results, e.g., hemoglobin, LDH, bilirubin, reticulocyte count) by completing the Lab Values Module;
  5. Wearable data (steps, activity, sleep, sleep quality, heart rate) by connecting to the wearable devices (Wearable Connect Module); and
  6. 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:

  1. Gender
  2. Age: Identifies users by six categories: 18-24, 25-34, 35-44, 45-54, 55-64, and 65+
  3. Geography (country)
  4. Language
  5. Interests: Lists the interests of the user (e.g., “Arts & Entertainment, Games, Sports”)
  6. Device Information
  7. 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:

  1. provide you with further details on the processing of your Personal Data;
  2. provide you access to your Personal Data that we hold about you and copies thereof;
  3. update any inaccuracies in the Personal Data we hold that is demonstrated to be inaccurate or incomplete;
  4. delete any Personal Data that we no longer have a lawful basis to use;
  5. provide you or a third party, with a copy of your data in a digital format (data portability);
  6. stop a particular processing when you withdraw your consent;
  7. 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
  8. 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: | email:, or send us your request via email at


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: 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, 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,

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:

  1. PNH Questionnaires
  2. Symptom Tracker
  3. Lab Values
  4. 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.


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.


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.


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.


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.


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.


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+).


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.


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.


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.


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.


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.


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.


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.


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.


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.