Agreement to Terms
We Do Not Provide Medical Advice
Code of Conduct
- 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
- 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.
Apple and Android Devices
- 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;
- 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
Reservation of Our Rights
- 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.
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.We will maintain certain data that you transmit to the App for the purpose of managing the App, as well as data relating to your use of the App. Although we perform regular routine backups of data, you are solely responsible for all data that you transmit or that relates to any activity you have undertaken using the App. You agree that we shall have no liability to you for any loss or corruption of any such data, and you hereby waive any right of action against us arising from any such loss or corruption of such data.
- 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.
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
Term and Termination
- Termination will not limit any of our rights or remedies at law or in equity.
Modifications and Interruptions
We will not be liable to you or any third party for any modification, suspension, or discontinuance of the App.
Disclaimer of Warranties
Limitation of Liability
- 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.
Digital Millennium Copyright Act (DMCA) Notice and Policy
- 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.If you send us a valid, written Counter Notification meeting the requirements described above, we will restore your removed or disabled material, unless we first receive notice from the party filing the Notification informing us that such party has filed a court action to restrain you from engaging in infringing activity related to the material in question.
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.Designated Copyright Agent EndFA, LLC 251 Little Falls Drive Wilmington, DE 19808Info@thefaapp.org
Arbitration and Class Action Waiver.
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.
Limitation of Time to File Claims
Last revised: April 13, 2021
- 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.
Additional information for European userThe FA App is a service provided by EndFA LLC. EndFA LLC, a company incorporated and registered in the State of Delaware, USA, is the data controller for the purposes of the EU General Data Protection Regulation and the UK General Data Protection Regulation (together, GDPR) and any relevant local legislation. We have appointed a Data Protection Officer who can be contacted using the contact details below (Contact Us).
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 firstname.lastname@example.org, quoting “The FA App” in the subject line; or
- contacting DataRep via their online webform at www.datarep.com/data-request.
2. Contact Us
3. Information We Collect
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: first name, last name, email address, gender, data of birth, location (address, city, state, country), language, type of user (FAer or proxy), (if proxy) whether you are legally authorized as a proxy, proxy ID, proxy FAer ID and whether you are registered on the FA global registry.
Profile data: Facebook ID, Facebook handle, Instagram ID, Instagram handle, profile photo (optional). Your Facebook and Instagram handles and IDs are used only to allow users to easily ‘jump’ to their profiles on those platforms. Your accounts with those platforms are not linked or connected with your account for our App.
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: certain registration data (as described above), health data/ My FA Information (limited to the data categories identified in the subsection ‘Registration’ below) and your responses (if you choose to respond) to questions in surveys asked by researchers or research institutions through the Research tab. Identifiable research data is only shared with researchers to the extent you provide consent.
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: My FA Information allows you to record, organize and track certain health 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: the coarse geo-location of your device (but not your specific location), which we use to obtain the closest city place ID for the purposes of connecting this with your user ID / profile (where you choose to use this functionality).
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: user ID, device identifiers (such as your browser type, operating system, and your IP address (a unique address that identifies your computer on the Internet), the full URL clickstream (i.e. where you have come from on the internet and where you go to, date and time) when you enter our Website or your device type, operating system, browser type, your IP address when you use the App), time spent on activities, number of times you opened the App, the coarse (regional) geo-location of your device (but not its specific location).
If you contact us, we store the communications we receive as part of our operations:
Communications data, this includes any information which you choose to provide to us when you communicate with us or receive customer support.
We also collect information relating to your preferences in receiving marketing or other non-service-related notifications or communications from us:
Preferences data, including your preferences in receiving FA community updates and/or other non-administrative-related notifications or communications from us and any relevant third parties to which you have expressly consented, your responses to market research or survey questions which we ask through the Services, and your engagement with our FA community updates and communications. Please visit the ‘Notifications’ section of the Settings section of the App to update your preferences.
Aggregated or Anonymized Information
4. How We Collect Information
(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).
5. How We Use Information
- 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.
6. Automated interactions and web technologies
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:
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.
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.
7. Sharing Information
With service providers: We may share certain personal information with third party service providers to help us bring you the Services. We use:
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: Within the privacy settings on the Services, you can choose to make your content and activity data on the Services public to all users of the Services or to limited subset of users (e.g. those in ‘My FAmily’). You may also decide to share a post to another platform. In such cases, users of our Services or those platforms will be able to see that content. When other users view your profile, they will also be able to see certain information about you depending on your privacy settings. Accordingly, you should always use your best judgement when providing and sharing information on the Services or any other platform.
With research institutions: As part of the Research section of the App, with your consent, we share your research data, including certain registration data and profile data, with researchers and research institutions running clinical or virtual trials and studies relating to Friedreich’s Ataxia. We also field questions to you on behalf of those researchers and research institutions and send your responses back to them.
In connection with compliance with laws and the protection of our rights and the rights of others: We may be required to access and disclose personal information in response to lawful requests, such as subpoenas or court orders, or in compliance with applicable laws. Additionally, we may access and share account or other personal information when we believe it is necessary to comply with law, to protect our interests or property, to prevent fraud or other illegal activity perpetrated through the Services, or to prevent imminent harm. This may include accessing and sharing personal information with professional advisors (such as lawyers, auditors and insurers), agents or government agencies, or law enforcement authorities.
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.
8. How Long We Retain Information
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.
9. Securing Information
10. International Transfers
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 usersWhere our service providers or other third parties (identified above) based outside the European Economic Area and/or the UK receive personal information, we ensure the transfer is either (a) to a country deemed to provide an adequate level of protection by a relevant government authority (e.g. the European Commission or the UK government) or (b) pursuant to standard contractual clauses approved by a relevant government authority (e.g. the European Commission or the UK government). Please contact us if you want further information on the specific mechanism used by us when transferring your personal information out of the UK, EEA or Switzerland.
11. Accessing and Correcting Your Personal Information; Your Rights
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/Information about the Swiss Federal Data Protection and Information Commissioner can be found here: https://www.edoeb.admin.ch/edoeb/en/home.html
If you need further assistance regarding your rights, please contact us using the contact details above (Contact Us).
12. FA Community Updates and Notifications
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 usersTo validly consent to the processing of your personal information under the GDPR, you must be at least 16 years old unless the country or territory where you reside has provided for a lower age of digital consent. Accordingly, for FAers between 13 and 15 (inclusive) who are European users, we may limit how we collect, use and store some of your information. This may include not providing certain functionality to you. Furthermore, depending on your country of residence, we may require your parent or guardian to sign up to the Services as your proxy. Unfortunately, in certain jurisdictions, we cannot permit FAers between 13 and 15 (inclusive) to have their own accounts.