“we,” “us,” “our”

“App”

• not post, communicate or forward false, inaccurate, or misleading content;
• not infringe upon any copyright, patent, trademark, trade secret or other proprietary rights or intellectual property rights of any other person;
• not post, communicate or forward defamatory or libelous content;
• avoid the use of profanity or other offensive language;
• refrain from insulting, abusive, threatening or harassing language or actions;
• not post any lewd, obscene or any other potentially offensive material;
• not use the App for any unlawful purpose;
• not provide medical advice;
• not counsel others to not follow medical advice provided by a physician or other health or medical professional;
• and be respectful to others, even when there are disagreements of opinions.

• download, install, and use the App for your personal, non-commercial use on a mobile device owned or otherwise controlled by you ("Mobile Device") strictly in accordance with the App's documentation; and
• access, stream, download, and use on such Mobile Device the Content and Services (as defined herein) made available in or otherwise accessible through the App, strictly in accordance with this Terms of Use and any other terms of use applicable to such Content and Services as set forth herein.

• make any unauthorized use of the App;
• violate any applicable laws, rules, or regulations in connection with your access or use of the App;
• copy, modify, translate, adapt, or otherwise create derivative works or improvements, whether or not patentable, of the App;
• reverse engineer, disassemble, decompile, decode, or otherwise attempt to derive or gain access to the source code of the App or any part thereof;
• remove, delete, alter, or obscure any trademarks or any copyright, trademark, patent, or other intellectual property or proprietary rights notices from the App;
• rent, lease, lend, sell, sublicense, assign, distribute, publish, transfer, or otherwise make available the App, or any features or functionality of the App, to any third party for any reason, including by making the App available on a network where it is capable of being accessed by more than one device at any time;
• remove, disable, circumvent, or otherwise create or implement any workaround to any copy protection, rights management, or security features in or protecting the App;
• use the App for creating a product, service, or software that is, directly or indirectly, competitive with or in any way a substitute for the App;
• use the App for any revenue generating endeavor, commercial enterprise, or other purpose for which it is not designed or intended;
• use the App for any illegal, indecent or obscene purpose, or misuse or misappropriate any information, communications, and imagery either published by us, third parties and/or affiliates, and/or other members and users, including other members’ or users’ personal information and their uploaded or posted content or imagery;
• upload or transmit (or attempt to upload or to transmit) viruses, Trojan horses, or other material, including excessive use of capital letters and spamming (continuous posting of repetitive text), that interferes with any party’s uninterrupted use and enjoyment of the App or modifies, impairs, disrupts, alters, or interferes with the use, features, functions, operation, or maintenance of the App;
• upload or transmit (or attempt to upload or to transmit) any material that acts as a passive or active information collection or transmission mechanism, including without limitation, clear graphics interchange formats (“gifs”), 1×1 pixels, web bugs, cookies, or other similar devices (sometimes referred to as “spyware” or “passive collection mechanisms” or “pcms”);
• attempt to impersonate another user or person;
• use any information obtained from the App in order to harass, abuse, or harm another person; or
• disparage, tarnish, or otherwise harm, in our opinion, us and/or the App.

App Distributor

• the terms are an agreement between you and us, not with the App Distributor;
• the license granted to you for the App is limited to a non-transferable license to use the App on a device that utilizes the Apple iOS or Android operating systems, as applicable, and in accordance with the usage rules set forth in the applicable App Distributor’s terms of service;
• We, not the App Distributor, is responsible for addressing your or any third-party claims relating to the App, including but not limited to: (i) product liability claims; (ii) any claim that the App fails to conform to any applicable legal or regulatory requirement; and (iii) claims arising under consumer protection or similar legislation. These Terms of Use do not limit our liability beyond what is permitted by applicable law;
• we are responsible for providing any maintenance and support services with respect to the App as specified in these Terms of Use or as otherwise required under applicable law, and you acknowledge that each App Distributor has no obligation whatsoever to furnish any maintenance and support services with respect to the App;
• in the event of any third-party claim that the App infringes that third-party's intellectual property rights, we, not the App Distributor, are solely responsible for the investigation, defense, settlement and discharge of any such intellectual property infringement claim;
• in the event of any failure of the App to conform to any applicable warranty, you may notify the applicable App Distributor, and the App Distributor, in accordance with its terms and policies, may refund the purchase price, if any, paid for the App, and to the maximum extent permitted by applicable law, the App Distributor will have no other warranty obligation whatsoever with respect to the App;
• you represent and warrant that (i) you are not located in a country that is subject to a U.S. government embargo, or that has been designated by the U.S. government as a errorist supporting" country and (ii) you are not listed on any U.S. government list of prohibited or restricted parties;
• you must comply with applicable third-party terms of agreement when using the App, e.g., if you have a VoIP application, then you must not be in violation of their wireless data service agreement when using the App; and
• you acknowledge and agree that the App Distributors are third-party beneficiaries of these Terms of Use, and that each App Distributor will have the right (and will be deemed to have accepted the right) to enforce these Terms of Use against you as a third-party beneficiary thereof.

Contributions

• you are the creator and owner of your Contributions and your Contributions do not and will not infringe the proprietary rights, including but not limited to the copyright, patent, trademark, trade secret, or moral rights of any third party.
• your Contributions are not false, inaccurate, or misleading.
• your Contributions are not unsolicited or unauthorized advertising, promotional materials, pyramid schemes, chain letters, spam, mass mailings, or other forms of solicitation.
• your Contributions are not obscene, lewd, lascivious, filthy, violent, harassing, libelous, slanderous, or otherwise objectionable (as determined by us).
• your Contributions do not ridicule, mock, disparage, intimidate, or abuse anyone.
• your Contributions do not advocate the violent overthrow of any government or incite, encourage, or threaten physical harm against another.
• your Contributions do not violate any applicable law, regulation, or rule.
• your Contributions do not violate the privacy or publicity rights of any third party.
• your Contributions do not contain any material that solicits personal information from anyone under the age of 18 or exploits people under the age of 18 in a sexual or violent manner.
• your Contributions do not violate any federal or state law concerning child pornography, or otherwise intended to protect the health or well-being of minors;
• your Contributions do not include any offensive comments that are connected to race, national origin, gender, sexual preference, or physical handicap.
• your Contributions do not otherwise violate, or link to material that violates, any provision of these Terms of Use, or any applicable law or regulation.

We do not assert any ownership over your Contributions. You retain full ownership of all of your Contributions and any intellectual property rights or other proprietary rights associated with your Contributions. We are not liable for any statements or representations in your Contributions. You are solely responsible for your Contributions and you expressly agree to exonerate us from any and all responsibility and to refrain from any legal action against us regarding your Contributions.

We have the right, in our sole and absolute discretion, to: (1) edit, redact, or otherwise change any Contributions; and (2) pre-screen or delete any Contributions at any time and for any reason, without notice. We have no obligation to monitor your Contributions.

• monitor use of the App for violations of these Terms of Use;
• take appropriate legal action against anyone who, in our sole discretion, violates the law or these Terms of Use, including without limitation, reporting such user to law enforcement authorities;
• in our sole discretion and without limitation, refuse, restrict access to, limit the availability of, or disable (to the extent technologically feasible) the App or any portion thereof;
• in our sole discretion and without limitation, notice, or liability, to remove from the App or otherwise disable all files and content that are excessive in size or are in any way burdensome to our systems;
• otherwise manage the App in a manner designed to protect our rights and property and to facilitate the proper functioning of the App.

“Updates“

Based on your Mobile Device settings, when your Mobile Device is connected to the internet either:

• the Application will automatically download and install all available Updates; or
• you may receive notice of or be prompted to download and install available Updates

Third-Party Materials

• The term of these Terms of Use commences when you download and/or install the App and/or acknowledge your acceptance and will continue in effect until terminated by you or us as set forth in this Section.
• You may terminate these Terms of Use by deleting the App and all copies thereof from your Mobile Device.
• We may terminate these Terms of Use at any time without notice. In addition, these Terms of Use will terminate immediately and automatically without any notice if you violate any of the terms and conditions of these Terms of Use.
• Upon termination: all rights granted to you under these Terms of Use will also terminate; and you must cease all use of the App and delete all copies of the App from your Mobile Device and account.
• Termination will not limit any of our rights or remedies at law or in equity.

We will not be liable to you or any third party for any modification, suspension, or discontinuance of the App.

We cannot guarantee the App will be available at all times. We may experience hardware, software, or other problems or need to perform maintenance related to the App, resulting in interruptions, delays, or errors. We reserve the right to change, revise, update, suspend, discontinue, or otherwise modify the App at any time or for any reason without notice to you.

• PERSONAL INJURY, PROPERTY DAMAGE, LOST PROFITS, COST OF SUBSTITUTE GOODS OR SERVICES, LOSS OF DATA, LOSS OF GOODWILL, BUSINESS INTERRUPTION, COMPUTER FAILURE OR MALFUNCTION, OR ANY OTHER CONSEQUENTIAL, INCIDENTAL, INDIRECT, EXEMPLARY, SPECIAL, OR PUNITIVE DAMAGES.
• DIRECT DAMAGES IN AMOUNTS THAT IN THE AGGREGATE EXCEED THE AMOUNT ACTUALLY PAID BY YOU FOR THE APP.

Notification

• A physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed;
• Identify in sufficient detail the copyrighted work that you believe has been infringed or, if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such works at that site.
• Identify the material that you claim is infringing the copyrighted work listed above and that is to be removed or access disabled, and information reasonably sufficient to permit us to locate the material;
• Provide information reasonably sufficient to permit us to contact you, including a name, address, telephone number and email address;
• If possible, provide information sufficient to allow us to notify the owner/administrator of the allegedly infringing content;
• Include the following statements:“I have a good faith belief that use of the copyrighted materials described above as allegedly infringing is not authorized by the copyright owner, its agent, or the law.”“I swear, under penalty of perjury, that the information in the notification is accurate and that I am the copyright owner or am authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.”
• Sign the notice.

To be an effective Counter Notification under the DMCA, your Counter Notification must include substantially the following:

1. Identify the specific URLs or other unique identifying information of material that we have removed or to which we have disabled access.

2. Provide your name, address, telephone number, email address, and a statement that you consent to the jurisdiction of Federal District Court for the judicial district in which your address is located and that you accept service of process from the person who provided notification under subsection (c)(1)(C) or an agent of such person.

3. Include the following statement: “I swear, under penalty of perjury, that I have a good faith belief that the material identified above was removed or disabled as a result of a mistake or misidentification of the material to be removed or disabled, or that the material identified by the complainant has been removed or disabled and will no longer be shown.”

4. Sign the notice.

Please note that if you materially misrepresent that the disabled or removed content was removed by mistake or misidentification, you may be liable for damages, including costs and attorney's fees. Filing a false Counter Notification constitutes perjury.

YOU AND WE AGREE THAT EACH MAY BRING CLAIMS AGAINST THE OTHER ONLY IN YOUR OR ITS INDIVIDUAL CAPACITY AND NOT AS A PLAINTIFF OR CLASS MEMBER IN ANY PURPORTED CLASS OR REPRESENTATIVE ACTION. Unless both you and we agree, no arbitrator or judge may consolidate more than one person’s claims or otherwise preside over any form of a representative or class proceeding. If a court decides that applicable law precludes enforcement of any of this Section’s limitations as to a particular claim for relief, then that claim (and only that claim) must be severed from the arbitration and may be brought in court.

If any provision or part of a provision of these Terms of Use is determined to be unlawful, void, or unenforceable, that provision or part of the provision is deemed severable from these Terms of Use and does not affect the validity and enforceability of any remaining provisions. There is no joint venture, partnership, employment or agency relationship created between you and us as a result of these Terms of Use or use of the App.

You agree that these Terms of Use will not be construed against us by virtue of having drafted them. You hereby waive any and all defenses you may have based on the electronic form of these Terms of Use and the lack of signing by the parties hereto to execute these Terms of Use.

we, us, our

This Privacy Policy applies to personal information that we collect and process:

- via The FA App mobile application software (App);

- via www.TheFAapp.org website (desktop and mobile version) (Website); and

- via other interactions you have with us including phone or online support and online or offline correspondence.

This Privacy Policy does not apply to any clinical or virtual trial or study in which you may enrol or participate whether through the App or otherwise.

We refer to the Website and the App as the “Services”. This Privacy Policy also contains additional information which applies to European users only. “European users” are individual users based in in the European Economic Area, the UK, and Switzerland.

By using our Services, you agree to the collection, use and sharing of your personal information as set forth in this Privacy Policy. If you do not agree to the terms of this Privacy Policy, you may not access or use the Services.

Additional information for European user

We have appointed GDPR representatives in the UK and the EU. If you want to raise any questions regarding the FA App, or otherwise exercise your rights in respect of your personal data, in the UK or the EU you may do so by:

- sending an e-mail to our representative for the UK and EU, DataRep, at datarequest@datarep.com, quoting “The FA App” in the subject line; or

- contacting DataRep via their online webform at www.datarep.com/data-request.

When you download and open the App, we will ask you to set up your profile. We collect registration data and profile data for this:

Registration data

Profile data

Once set up, you will see that our App is divided into four sections: Learn, Research, My Vault and Connect.

Learn contains two subtabs: News and Q&A. We do not collect or process personal information as part of the Learn section.

Research contains three subtabs: Clinical, Virtual and My Research. As part of Clinical, you can see information about certain FA research, including currently-enrolling third-party research. To the extent that you make any contacts or provide any information for third-party research, please note that these are third-party materials and third-party links (as discussed elsewhere). As part of Virtual, you can, if you choose, participate in research through answering questions on the App. (We field questions to you on behalf of researchers and send your responses back to them or otherwise connect you to the research.) Additionally, with your consent, we share data (including personal information) to the researchers. As part of My Research, you can see which studies and/or trials you are participating in. We call the personal information we collect as part of the Research section ‘research data’:

Research data

My Vault contains two subtabs: Tools (Appointments and Supplements) and Journals (Gratitude Journal, Personal Journal and Micro Blog). As part of your activity on the App, you can choose to make your Micro Blog available to your friend circle on the App (which we term ‘My FAmily’) or the whole App community.

Content and activity data:

My FAmily: FAmily ID, user ID, relationship.

Microblog: Blog post, time zone, timestamp and whether the post is visible to all or just ‘My FAmily’.

My Journal: Journal entry, time zone, timestamp.

Gratitude Journal: Journal entry, time zone, timestamp.

As the purpose of the Services is to serve the needs of the FA community, we collect health data, which is sensitive personal information, including tools for FA patients to record and track certain health information. We have summarised when and what information we collect below:

Health data / My FA Information

Registration: Registration data for the app (identified above), symptom information, age of symptoms onset, age of diagnosis, other information you choose to submit to the extent this is data relating to health under applicable law.

Appointments: Doctor name, doctor speciality, doctor location, data of visit, notes.

Supplements: Name of medication/supplement state of usage, end of usage, dosage, frequency, notes.

Connect allows you to discover people and places relating to the App community. Your profile is set to private by default, but you can choose to make yourself visible to others. You can choose to add your initials, name and/or provide your more specific location. You can also choose whether other users of the App can contact you or not and add people to ‘My FAmily.’

Location data

As with any website or app provided via the internet, we collect certain technical and behavioural data about your use of the Services which we have summarised below:

Technical and behavioural data

If you contact us, we store the communications we receive as part of our operations:

Communications data

We also collect information relating to your preferences in receiving marketing or other non-service-related notifications or communications from us:

Preferences data

Aggregated or Anonymized Information

We also collect, use and share aggregated or anonymized data such as statistical or demographic data for any purpose. Aggregated or anonymized data could be derived from your personal information but is not considered personal information in law as this data will not directly or indirectly reveal your identity. If we combine or connect aggregated data with your personal information so that it can directly or indirectly identify you, we treat the combined data as personal information which will be used in accordance with this Privacy Policy.

(a) directly from you (for example, when you download the App and/or set-up an App account); and

(b) through automated technologies and interactions (for example, as you interact with and use our Services).

• To set out your profile and provide the Services.
• To connect you to researchers conducting research relating to Friedreich’s Ataxia.
• For scientific research relating to Friedreich’s Ataxia.
• To provide you with additional features on the Services (e.g. Connect) based on your location.
• To respond to your enquiries.
• To send you FA community updates and notifications.
• To send you transactional and administrative messages related to the Services.
• To keep the Services safe and secure.
• To comply with our legal and regulatory obligations and protect our legal rights and interests.
• To improve the Services and develop new services for the FA community.
• To estimate audience size and usage patterns, provide content and features that match your interests or preferences, to speed up searches and/or to recognize you when you use the Services.
• For any other purpose notified to you within the Services.

For European users, we rely on the following legal grounds for processing your personal information:

Processing Purpose - Legal Basis to Process your Personal Information

Set up your profile and provide the Services To perform our terms of service with you to provide the Services and our legitimate interests in fulfilling our mission to serve the FA community.Where this involves processing health data, your consent.We also rely on your consent for the download and installation of the App on your device.

Connect you to researchers conducting research relating to Friedreich’s Ataxia Your consent.

For scientific research relating to Friedreich’s Ataxia Your consent.

Provide you with additional features on the Services (e.g. Connect) based on your location Your consent.

Respond to your enquiries Where your enquiry relates to a specific aspect of the Services: to perform our terms of service with you and to provide our Services.Alternatively, our legitimate interests in providing high quality customer service and responding to enquiries posed to us.

Send FA community updates and notifications Your consent.

Send you transactional and administrative communications related to the Services To comply with a legal or regulatory obligation, and/or our legitimate interests in efficiently fulfilling our legal and contractual duties, keeping you informed about important Service updates (such as scheduled maintenance or security updates) security, and providing high quality customer service.

To keep the Services safe and secure To comply with a legal or regulatory obligation and/or our legitimate interests in ensuring the security of the Services, preventing fraud, and creating and maintaining positive, safe and friendly space for user interaction.

Comply with our legal and regulatory obligations and protect our legal rights and interests To comply with a legal or regulatory obligation and/or our legitimate interests in efficiently fulfilling our legal and contractual duties, managing legal risk, and complying with regulations that apply to us.

Improve the Services and develop of new services for the FA community Our legitimate interests in providing high quality products and services, keeping our existing user base engaged with our Services, expanding our user base and attracting new users, and fulfilling our mission to serve the FA community.

Estimate audience size and usage patterns, provide content and features that match your interests and preferences, to speed up searches and/ or to recognize you when you use the Services Our legitimate interests in developing the Services, keeping content and features relevant, keeping users engaged with the Services, and fulfilling our mission to serve the FA community.

You can find more information about cookies and how to manage them at www.allaboutcookies.org.

Our Website may use the following types of cookies for the purposes set out below:

Type of Cookie - Purpose

Essential Cookies
These cookies are essential to provide you with services available through our Website and to enable you to use some of their features. Without these cookies, the services that you request via our Website may not be possible to provide. We only use these cookies to provide you with those services.

Functionality Cookies
These cookies allow our Website to remember choices you make when you use our Website. The purpose of these cookies is to provide you with a more personalized experience and to avoid you from having to re-select your preferences every time you use our Website.

Analytics and Performance Cookies
These cookies are used to collect information about traffic to our Website and how users use our Website. The information gathered may include the number of visitors to our Website, the websites that referred them to our Website, the pages they visited on our Website, what time of day they visited our Website, whether they have visited our Website before and other similar information. We use this information to help improve our Website and operate it more efficiently, to gather demographic information and to monitor the level of activity on our Website.

You can typically remove or reject cookies via your browser settings. To do this, follow the instructions provided in your browser (usually located within the “settings,” “help,” “tools” or “edit” facility). Many browsers are set to accept cookies until you change your settings.

If you do not accept our cookies, you may experience some inconvenience in your use of our Website. For example, we may not be able to recognize your device and you may need to log in every time you visit our Website.

While we do not use cookies on the App, we do use App installation IDs to recognize you. We use the App installation ID and mobile analytics software to allow us to better understand the functionality of the App on your device. The software records information similar to that set out in Functionality Cookies and Analytics and Performance Cookies above, such as how often you use the App, the activity that occurs within the App, aggregated usage, performance data, and where the App was downloaded from.

With service providers:

1. Amazon Web Services as a hosting and platform provider, which receives and stores all the categories of data set out in Section 3 (Information We Collect).

2. Google Analytics / Firebase as an analytics provider, which collects certain technical and behavioural data as part of providing this service. You can block Google Analytics’ collection of data regarding your use of the Website by downloading and installing the browser add-on found here: http://tools.google.com/dlpage/gaoptout?hl=en.

3. Crashlytics which helps us collect, analyse and organize crash reports and errors relating to the App as part of which it collects certain technical and behavioural data.

4. Sentry which monitors our Website to help us discover, triage, and prioritize errors in our Website as part of which it collects certain technical and behavioural data.

With other users of the Services or other platforms

With research institutions

In connection with changing the way we operate

In connection with compliance with laws and the protection of our rights and the rights of others

To fulfil the purpose for which you provide it.

We share information about you that has been aggregated or anonymized, including activity data (see above), such that it cannot reasonably be used to identify you in any way for any lawful purpose, e.g. announcing how many people are on the App.

Additional information for European users

Where you have an account on the Services, we retain your personal information while you have an account. Where you choose to terminate your account, we delete or anonymize your personal information within 100 days, unless we need to retain your personal information for legal, accounting, or reporting reasons.

In some circumstances we may anonymize your personal information (so that it can no longer be associated with you) in which case we may use this information indefinitely without further notice to you.

By providing your personal information through the Services you acknowledge that your personal information is transferred to and accessed by our personnel in the United States.

Additional information for European users

You may also contact us using the contact details above (Contact Us) to request access to, correct, or delete any personal information that you have provided to us. We may not accommodate a request to change information if believe the change would violate any law or legal requirement or cause the information to be incorrect.

Additional information for European users

We respond to all legitimate requests within one month. If, taking into account the complexity and number of requests, we require longer to respond we may extend the timeframe by up to two further months but we will notify you if this is the case. Where a request is clearly unfounded or excessive, we may either charge a reasonable fee or refuse the request.

You have the right to make a complaint at any time to your supervisory authority for data protection issues. However, we would appreciate the opportunity to address any concern you have in the first instance. Therefore, please contact our Data Protection Officer before contacting your supervisory authority.

A list of EU supervisory authorities is available here: http://ec.europa.eu/justice/data-protection/bodies/authorities/index_en.htm

The relevant UK supervisory authority is the UK Information Commissioner’s Officer: https://ico.org.uk/

If you need further assistance regarding your rights, please contact us using the contact details above (Contact Us).

You may opt out of FA community-related emails by clicking on a link at the bottom of each such email, or by contacting us using the contact details above (Contact Us). You may continue to receive service-related and other non-marketing emails.

We will get your express opt-in consent before we share your personal information with any third party for their marketing purposes.

Additional information for European users