Global Online Support Hub Use Policies

Global Online Support Hub (“GOSH”) is wholly owned and operated by Defeat MSA™. As a user of this service, by agreeing to the terms of use, you promise not to represent yourself as an employee or representative of Defeat MSA™ or GOSH without prior authorization. You will not use the name Defeat MSA™ or the GOSH name or their images and logos on merchandise without the prior approval of Defeat MSA™.

You may choose to terminate this service at any time and the ability to delete your profile information before you do so. If you terminate this service, your profile or user information will not be retrievable by you. Additionally, after a specific support group session (“SGS”) has ended, you will be unable to retrieve the content of the chat session. These practices are in place to protect the privacy of the users, as much as possible.

Most entities that provide support groups for their community are non-profits, staffed by volunteers and do not meet the definition of a HIPAA covered entity, such as a “health care provider.” (HIPAA, see 45 CFR 160.103). Participants in support groups may expect that whatever they disclose to be held in confidence by the group administrators and other participants, but such disclosures may not be covered by HIPAA regulations given the nature of the support group. Health information disclosed by an individual to another user in the support group falls outside the definition of “individually identifiable health information” and thus, is not HIPAA protected health information (PHI).

Use of this software is prohibited in certain countries to which export of Cryptography is banned. These are "Terrorist Supporting Countries" classified as "E1" as defined in EAR part 772.1 of US Export Laws. In addition, the use of this software and platform is unavailable in what we characterize as politically unstable countries and regions.

Terms of Use

In order to register and use the GOSH, you must agree to the Terms of Use. The terms of use have been modified as of January 25, 2018. Tokbox, Inc. Terms of Use have been incorporated into the GOSH Terms of Use. Users also must abide by the Digital Millennium Copyright Act (1998). Any violation of Terms of Use may result in the banning of a user’s access or if appropriate, other criminal or civil sanctions. As required, any security deficiencies and/or intrusions to the GOSH will be reported to our partners.

Use of this service is FREE for non-commercial use for any adult (18 years of age or older) member of any of the progressive brain disorder communities targeted by the Hub. In order to use this service, you must either be a patient with a diagnosis of a progressive brain disorder by a licensed healthcare provider, such as a neurologist, internist, primary care doctor, etc., or you must be a caregiver for a person diagnosed with one of these disorders. The only users exempt from this use requirement are the volunteers who staff GOSH.

Technical Hub and Video Chat Support Group Privacy Policies

Your privacy is of the utmost importance to us. Therefore, we have designed our Privacy Policies to make important disclosures about how you can use the GOSH website and applications to communicate with others within any of the progressive brain disorder communities and what information we collect and use. We encourage you to read this document thoroughly and to use it to help you make informed decisions.

Identity and Sharing Information  

We place extraordinary importance to your privacy and protecting it while you use our platform and applications. As part of our desire to provide security for your data, we also need to be confident of your identity so that other users and the administrators know to whom they are talking. Thus, your name, contact information and diagnosis will be asked during the sign-up process. However, unless required by law to do so, we will not share your information with anyone.

You own all of the video content, text words and other information you post on GOSH, and you can control how it is shared while in the support group session. Only in cases when a user posts or discloses information, which indicates that he or she has a possibility of harming himself/herself or others or engaging in behavior or speech that violates the law, will such identifying information be shared with the appropriate authorities.

Medical Information Disclaimer

Any information discussed, posted or exchanged between participants using GOSH, associated websites or applications is for informational purposes only and should not be used for diagnosis, treatment, or understood as a recommendation for any course of action for any medical condition. Defeat MSA™ has used all reasonable care in providing the limited information on its websites, including whatever is provided via this Hub but makes no warranty or guaranty as to its accuracy. Every visitor to this website, chat or associated applications should consult with a doctor or other health care professional for diagnosis, health tests and/or treatment of any medical condition.

We make all reasonable efforts to ensure the privacy of the support group and what is discussed in it. This platform and the associated applications are not intended to serve as a healthcare provider. Participants are not permitted to give any advice to others pertaining to diagnosis, treatment, tests or prognosis of any health related problem. If such advice is given, Defeat MSA™, the Global Online Support Hub and any associated organization or individuals are not liable for that advice, communication, direction or unauthorized behavior.

Your Consent  

By using GOSH, associated platforms, websites or mobile applications, you consent to our privacy policy and other policies discussed herein.

GOSH Profile Photos

An individual’s photo (or avatar) uploaded by a user as their profile photo to the GOSH is visible only to other registered users, if made available. We will not post an open link on the Internet to your profile photo. At any time, you can delete your photo and it will be unavailable on our video chat system. Currently, only administrators are permitted to upload files to the GOSH and all photos must be approved by GOSH administration.

Content Moderation  

Public (discoverable and searchable) viewable content or materials of any kind (text, graphics, images, photographs, sounds, etc.) that in our reasonable judgment may be found objectionable or inappropriate, for example, materials that may be considered obscene, pornographic, or defamatory will be removed from GOSH and such material may be reported to the authorities. Users who create inappropriate content on the GOSH are subject to having their account revoked, inactivated or disabled.

GOSH Video Chat Rooms

The video and text chat rooms are private, encrypted and not exposed to non-members of the designated room. GOSH administrators decide which rooms will be established, which ones are operating, when they operate and approves the user’s admission to a video-chat room. Initial admission and continued access for a user to a room is entirely at the discretion of the GOSH administrators and oftentimes is, dependent upon feedback from moderators, facilitators and others. If a GOSH user violates any policies, his/her access to the GOSH website and/or mobile applications may be revoked. Furthermore, any user has the power to block another user from viewing their camera. Subscribers cannot see who is participating in any other GOSH rooms unless they are a member of that room. Rooms are not visible to search engines or robot crawlers. Currently, it will impossible to send a private message to another participant in the chat.

Video Recording, Audio Recording and Screenshots Prohibited

Video recording, audio recording and taking screenshots by any general user of the Hub is strictly prohibited. If it is determined that a participant user has taken video or audio recording or screenshots of any user, or even of themselves, that user will be banned from the Hub.

Occasional Recording by Administration Only with Users Permission

On occasion, a GOSH administrator may record a support group chat. In the event that a chat will be recorded, the moderator will inform all members of the group that the session is about to be recorded and the members will be given the opportunity to verbally consent and/or leave the group chat if they are not comfortable with the recording. Recording is authorized to be done by administrations (for technical or archiving purposes) during the scheduled chat support group meetings. It will not be done at any other time nor shared with anyone else.

Passwords and Registration Information

Passwords to GOSH are stored with encryption or as hashes. Only you can know your password. We cannot view it or modify it for you. You may reset the password yourself as long as you control your email address. In the event that you lose control of your email address, we advise you to set up a new account or send a service request to the GOSH administrator to reactivate your account.

Encryption ciphers used meet or exceed US Government security requirements. We do not store your password directly (we use something called an irreversible hash). This means that we cannot see your password or log into your account without your knowledge. We are also unable to change your passwords for you. We do not read or modify EXIF data from your profile photo. We do not track your personal/private information in cookies. Unless required to do so by law, we will not track your location or your IP address.

What information do we collect?

During the initial sign-up process, we will ask you for your first and last name, your address, your contact information including, your email address and a primary and secondary phone number, as well as your self-reported diagnosis. You must have access to the email address you provide. We will verify it for your protection. If you do not provide all the information we request at the initial sign-up, you will not be given access to the GOSH or the associated IOS or android applications.

Your username (handle or nickname) is the only thing that is available to other GOSH users. By default, your profile photo (or avatar) is private. Only you can make it available to other users within GOSH, after it is approved by the GOSH administration. All other information collected during sign-up is private. As an easy method of contact for the support group session, users can create a handle or nickname to use during support group sessions. Your email will be automatically hidden from the other general users on the website and in the IOS and Android applications. Your handle will be shown instead. All communication will only show your handle as your identity.

The secondary phone number, such as a mobile number we request, is for our use if we have difficulty obtaining the needed information for registration. We consider your name and your contact information to be very private. It is never displayed on GOSH for other regular users to see it. In order to protect user privacy as much as possible, we suggest creating a username that does not include any part of your real name, location or contact information.

Your primary or secondary mobile number will never be displayed or made available to other general users anywhere on GOSH or in the associated IOS or Android applications.

Privacy Regarding Third Parties

We strive to limit exposure of your identity on the Internet on social media posts, likes, or any other content created through GOSH and we do not use any of that material to track your behavior in any way for advertising purposes. We do not share your information with any commercial entities. We will not sell, exchange, or transfer your email address, or contact information to other companies without your express permission, unless required by law to do so.

We will contact you via email only in relation to matters pertaining to this GOSH platform and associated applications, such as messages or alerts from the administering charity regarding technical information or patient support messages.

We do not collect personally identifiable information (PII). There are no “hidden profiles" on you. You are free to reveal information to those you are communicating with on your own. However, we cannot facilitate the relay of that information.

Secure Layer

We take extraordinary precautions to ensure that your data remains private. Our security layers and features forbid individuals to search posts or messages.

Support Group Chat General Guidelines

Please avoid offensive language, political or religious texts, posts or verbal comments (spiritual and life-affirming ones are fine), excessive talking or texting in group sessions, dominating the conversation via text or on video chat, direct fundraising, belittling others or commercial solicitations. We have a zero tolerance policy for any illegal activity, drug use on camera or discussed via text, verbal or written harassment or bullying of any sort. Any violations of these policies will result in banning or revocation of the permission to use GOSH, associated applications, websites access or membership in Hub connected social media groups or pages. Suspected violators may also be reported to the appropriate authorities. Direct or indirect fundraising by competing MSA and/or other progressive brain disorder organizations or connecting to other users in order to facilitate fundraising of any kind is not permitted on the Hub. If it is determined that an individual is using the Hub for this purpose – to connect with potential donors, that individual will be banned from the Hub. By your use of the Hub, you are promising not to engage in fundraising, charity advancement or donor base development for any charity or organization that competes directly or indirectly with Defeat MSA or the MSA Awareness Shoe. Any statement or behavior that smears, disparages or defames any regular Hub user, any Hub moderator or administrator, any Hub donor or charity sponsor is prohibited.

Please treat everyone with a high degree of respect and kindness! None of administrators, moderators, buddies or other group members are trained in counseling or medical education. We cannot and will not provide medical advice, treatment recommendations, and advice on medications or medical tests or help you by suggesting a diagnosis. If you have questions about your health, whether it is psychological, spiritual or physical, you must contact your healthcare provider.

GOSH Code of Conduct

  • Observe the rules of netiquette http://www.albion.com/netiquette/corerules.html
  • Please do protect the confidentiality of the discussion.
  • Since GOSH is designed to serve the progressive brain disorder communities, the only people permitted to be on camera are patients that are diagnosed with one of those disorders and/or their caregivers, who are 18 years of age or older. At no time, should individuals that have not consented to being on camera be intentionally or inadvertently on camera.
  • Efforts should be made to point the camera upwards at the head and face. Cameras that are directed toward walls or any place that is not at a user’s face will be stopped from broadcasting, to allow for the user to redirect his/her camera.
  • Do not share what is said within the group with other people outside that specific group session.
  • Do not video record, audio record or take screenshots in the GOSH.
  • Do not violate terms of use. In particular, do not do any illegal or obscene activity on camera.
  • Do not send chat messages or camera images that are deliberately hostile and insulting to other users or would be perceived as such by other users in your chat.
  • Do not trade insults with any other users. If a posting offends you, contact a moderator.
  • Do not harass, bully or annoy other users.
  • Do not market products or fundraise for any cause in the support groups.
  • Do not lobby or advocate politically for any person, policy or legislation in the groups.
  • Do not preach or proselytize for any religious point of view
  • Do not suggest a diagnosis, recommend medicines, advise for any tests or treatments or suggest a prognosis.
  • Stay on topic, avoid bringing up different topics.
  • Do try to be friendly, helpful to others, thank everyone for participating and thank, especially the moderators and buddies for volunteering their time.
  • Do not use HTML or insert links into the chat.
  • Do not use rude, offensive or obscene language.
  • Do not make jokes about other users or other members of any other community.
  • Do not reveal confidential information about others without their consent to group members.
  • Respect the authority of the Moderator at all times.
  • Do not monopolize the time of the meeting. Make your point and defer to other participants so they can contribute their opinions. Any user can choose to refrain from disclosing information to any other user in the SGS.
  • If a user violates the Code, he/she may receive a verbal and/or written email warning regarding behavior and possibly a suspension of the user access to the GOSH. When the suspended period is up, the offender may resume participation with full privileges. The administrator will decide on all cases, involving permanent suspension or banning from the GOSH.

Adult Participants (18 years of age or older)

Since GOSH is designed to serve the progressive brain disorder communities, the only people permitted to be on camera are patients that are diagnosed with one of those disorders and/or their caregivers, who are 18 years of age or older. At no time, should individuals that have not consented to being on camera be intentionally or inadvertently on camera. Efforts should be made to point the camera upwards at the head and face. Cameras that are directed toward walls or any place that is not at a user’s face will be stopped from broadcasting, to allow for the user to redirect his/her camera.

Internet Privacy Protection Act Compliance

Because we value your privacy we have taken the necessary precautions to be in compliance with the Internet Privacy Protection Act (Act 478 of 2012). We therefore will not distribute your personal information to outside parties without your consent, unless required by law. As part of our Privacy Policy, all users of GOSH and associated applications may edit their profile information at any time, while they are using GOSH. To make changes to their information, you must login into account and go to the 'Profile' page. We encourage you to do so, at any time, if you have any concerns whatsoever. However, all profile information, include photos must be approved by us, before they can be made public.

Children's Online Privacy Protection Act Compliance  

We are in compliance with the requirements of COPPA (Children's Online Privacy Protection Act); we do not permit this application or platform to be used by anyone under 18 years of age. Our website, video platform, support chat groups and applications are solely directed to the caregivers of and/or patients currently diagnosed by a licensed physician with any progressive brain disorder who are at least 18 years old or older.

Your Commitments Concerning Use  

We do our best to keep GOSH safe, but we cannot guarantee it. We need your help to keep this platform safe and available to everyone in our communities who need it, which includes the following commitments by you:

  • You will do your best to act as ‘a good citizen’ of GOSH, keeping communication between all users confidential and alerting us to any communication, whether on video or via text that violates or gives the appearance of violation GOSH policies.
  • You will not post unauthorized commercial communications (such as spam) or use the support groups to groom or recruit donors.
  • You will not collect users' content or information, or otherwise access the GOSH, using automated means (such as harvesting bots, robots, spiders, or scrapers) without our prior permission.
  • You will not engage in unlawful multi-level marketing, such as a pyramid scheme, on the Global Online Support Hub (GOSH).
  • You will not create discoverable or searchable content that can be considered obscene, violent, illegal, pornographic, defamatory, abusive or inappropriate.
  • You will not upload viruses or other malicious code.
  • You will not solicit login information or access an account belonging to someone else, unless you are a caregiver of someone with a progressive brain disorder and you have been authorized to access that user’s account or you are a GOSH administration.
  • You will not use GOSH to do anything unlawful, misleading, malicious, or discriminatory.
  • You will not do anything that could disable, overburden, or impair the proper working or appearance of GOSH, such as a denial of service attack or interference with page rendering or other GOSH functionality.
  • You will not facilitate or encourage any violations of this Statement or any of our other policies.
  • You will abide by the Code of Conduct, including policies related to harassment, bullying and efforts to market products or fundraise in the support groups. For further information about the Code of Conduct, please refer to the section above dealing with Support Group Guidelines
  • You must agree to the Terms of Use before using this service.

Changes to our Privacy Policy

If we decide to change our privacy policy, we will post those changes on our websites:
http://www.defeatmsa.org or http://www.brainpatient.org

Contacting Us

If there are any questions regarding these privacy policies, you may contact us using the information below.  

GOSH@brainpatient.org

Defeat MSA™
29924 Jefferson Avenue
Saint Clair Shores, Michigan 48082

We are all in this together, let’s speak as friends - with one voice and one heart!

For Information about MSA, visit: www.DefeatMSA.org

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