People with brain disorders face significant challenges finding support and learning about research. Similarly, people with rare diseases need extra help locating suitable resources. This Brain Hub is designed as a way for patients and caregivers to build support groups and to connect with vital research opportunities.

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Benefits of Video Chat Support Groups

  • They can help improve coping skills and manage stress.
  • They can serve as a place for patients and caregivers to compare notes on conditions.
  • They can help people get information about good doctors and treatment options.

Get connected to others traveling the same journey, whether they live nearby or far away! Pick your region, anywhere in the world! Registration is easy, quick and strictly confidential. We will do the rest!

Frequently Asked Questions (FAQ)

  • 1) What is GOSH?

    GOSH is an acronym for Global Online Support Hub. The hub is designed to be used by people who have been diagnosed with or are a caregiver of someone with a brain disorder.
  • 2) What is a Support Group Session?

    Support Group Sessions (“SGS”) are conducted via computers and the internet - they are a combination of video conferencing and text chat. Each session is scheduled and moderated by a volunteer who has personal experience in dealing with a brain disorder. Use of this service is FREE for non-commercial use for any adult (18 years of age or older) that is either a patient diagnosed with a brain disease or a current caregiver of a patient with a brain disease. The only users exempt from this particular use requirement are the volunteers who staff the GOSH.
  • 3) What is the Privacy Policy of GOSH?

    Your privacy is of the utmost importance to us. We have designed our Guidelines to allow us to make important disclosures about how you can use the GOSH website and applications to communicate with others. Our guidelines also advise you what information we collect and how we use that information. We encourage you to read the Guidelines and utilize them to help you make informed decisions.Most organizations or religious groups that provide support groups for the particular community they serve are non-profits, staffed by volunteers and therefore, do not meet the definition of entity covered by the Health Insurance Portability and Accountability Act (HIPAA), such as a “health care provider” (45 CFR 160.103). Participants in support groups may expect that whatever they disclose to others to be held in confidence by the group administrators and other participants, and we ask participants to honor this code of confidentiality, but such disclosures are not be covered by HIPAA regulations given the nature of a support group. HEALTH INFORMATION DISCLOSED BY AN INDIVIDUAL USER REGARDING THEIR HEALTH TO ANOTHER USER OR TO AN EXTERNAL PARTY FALLS OUTSIDE THE SCOPE OF “INDIVIDUALLY IDENTIFIABLE HEALTH INFORMATION” AND THUS, IS NOT HIPAA PROTECTED HEALTH INFORMATION (PHI).
  • 4) Why am I required to register?

    We place extraordinary importance on your privacy and protecting it while you use GOSH and its applications. As part of our desire to provide security for your use of GOSH, we also need to be confident of your identity so that administrators know to whom they are talking. Thus, your name, contact information and diagnosis will be asked during the sign-up process. You will also be required to read and agree to the Guidelines (which include the Terms of Use and other policies) before your registration is activated. However, your use of GOSH, it’s associated social media groups and affiliated charity websites or GOSH mobile applications, implies consent to our Terms of Use, Privacy and other Guidelines, including the SGS Code of Conduct.
  • 5) Can I rely on the information I get from others in the SGS about my health?

    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 a recommendation concerning any medical condition. Defeat MSA Alliance has used all reasonable care in providing the limited information on its websites, including whatever is provided via this Hub and each Support Group Session (SGS) but makes no guaranty or warranty as to its accuracy. Every visitor to this GOSH, associated websites, chat rooms or the applications should consult with a doctor or other health care professional for diagnosis, health tests and/or treatment of any medical condition.
  • 6) Is there a video chat room for my region?

    At present, the established regional groups reflect the known regions where patients targeted by the hub live. Overtime, it is likely that the number of groups and what regions they cover will change as more patients are identified. If you would like to submit a request for a video chat group for your region, we encourage to do so by requesting to add a group. There is a button on the homepage that will take you to information on how to submit a request. A group may be added depending on the number of users (patients and/or caregivers) in your area. We will consider all requests and we will do our best to connect you with others in your region.
  • 7) Who can be on camera in the chat?

    Since the GOSH is designed to serve various brain disease 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 viewable 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. Users that violate this policy may be kicked from the support group session. Repeat offenders will be banned from the GOSH.
  • 8) Can I block someone from viewing me?

    Every user in the chat session has the ability to turn off his/her camera at any time and still remain in the chat session. A user can also request his/her camera to be blocked from viewing by the moderator. At present, in the current GOSH version, it is impossible for a user to block another viewer from his/her camera without blocking all viewers in the group. We are working on providing this option in the next version of the GOSH.
  • 9) Who moderates the Support Group Meeting (SGS)?

    The Support Group Sessions are moderated by volunteers, people that have experience or have been affected by one of the diseases targeted by the Hub.
  • 10) How can I help keep these support group meetings going?

    The Hub is entirely funded by individual donations and by the sponsoring charities. By clicking on the Hub donation banners and donating, every contribution is tax deductible and will help keep this resource available. Our records will show you came through the Hub and if you earmark your donation as Patient Support, it will be used to support the Hub. We are charged for video upload and download bytes, chat texting services, Hub development and Hub maintenance. Any and all donations would be greatly appreciated. Large donations from individuals or companies will be publically thanked and listed on our Hub donors page. If you want to support the Hub, with a large donation, please send us an email support@brainpatient.org
  • 11) What does a moderator do?

    A moderator is an adult volunteer who monitors the video and texting chat in the SGS. He or she also helps facilitate the support group meeting.
  • 12) What does a buddy do?

    A buddy is an adult volunteer who helps keep the conversation flowing. Sometimes, for example in smaller rooms, the room moderator will take over the duties of the buddy.
  • 13) Can I volunteer as a moderator or buddy?

    If you have experience as a former or present caregiver of someone with a brain disorder or have formal training or professional experience dealing with people suffering from a brain disease, and you have the willingness to learn the operations of the Hub, then yes, we need you! You can put in a request to volunteer here. We are sincerely grateful for your help!
  • 14) If I am a current patient or caregiver, does it cost me anything to use GOSH?

    The GOSH is provided FREE of charge to any current adult patient with a progressive brain disorder and/or the caregiver(s) of someone with those disorders who is 18 years of age or older. Support Group Sessions are usually set up and organized according to the kind of disorder. Check under your region to see if there is a disease-specific support group session scheduled to fit your needs.
  • 15) Can I see another user’s profile?

    You can see another user’s profile if they have made their profile available to other users. Each profile is private by default.
  • 16) Can I delete my profile?

    Yes, you can delete your profile and terminate your membership in the Hub at any time. If you choose to continue using the Hub, you can always make your profile private to other users. If you terminate your use of the Hub, your past user information will be the only information available to the Hub administration and this information will be kept in the strictest of confidence.
  • 17) Do you have a code of conduct for people in the SGS?

    Yes, there is a code of conduct for all users of the Hub. It can be found on the Guidelines page here.
  • 18) What if I have a technical problem?

    The first step is to search in the knowledge base of the Hub. If you cannot find your answer there, you may submit a ticket request for technical help to: support@brainpatient.org. All technical help requests must be in English. Please note: there is no paid staff for technical help.
  • 19) Is audio or video recording or taking screenshots permitted in the chat?

    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.
  • 20) Who sponsors GOSH?

    At the initial launch of the Hub, the only sponsoring charity is Defeat MSA Alliance (defeatmsa.org), an IRS 501(c) (3) approved public non-profit, based in the United States.
  • 21) What is your policy on advertisers or third parties?

    No advertisers or third party commercial entities are supported by GOSH, provided with information or have access to the Hub.
  • 22) Will there be technical security risks in using GOSH?

    Security risks are always a possibility on the Internet. However, we take extraordinary precautions to ensure that your data remains private. Our security layers and features forbid individuals to search posts or messages.
  • 23) What can I post on my profile?

    Your profile will allow you to post a photo of your face or an avatar on your profile. All photos must be submitted and approved by a Hub administrator before they will be published on a Hub profile.
  • 24) Can I contact other users privately?

    Currently, it will impossible to send a private message to another participant in a SGS.
  • 25) Can I get a list of other users with their contact information?

    No list of participants, past or present, is provided to any patient or caregiver user on the GOSH.
  • 26) Can we have speakers present at a video chat?

    Since the Hub is geared to patient and caregiver support, if guest speakers are invited to provide a longer lecture (such as a neurologist, speech therapist, physical therapist, etc.), the feed provided to the support group will be broadcast via another platform such as YouTube. On occasion, an expert or health specialist may be invited to join a support group as a guest observer. But please remember, they cannot provide medical advice or recommendations.
  • 27) When are the SGS scheduled?

    A Support Group Session (SGS) will be scheduled for each region, when it is determined that enough participants are interested. Participants will be invited to reserve a place or seat (RSVP) in the available SGS that are posted in a particular region. There are no automatic reminders delivered via email, so please write down the date and time of the SGS that you have reserved.
  • 28) How do I reserve a place/seat for a scheduled SGS?

     By going to the video groups page, participants may access a list of country-wide, regional and smaller group(s) within a region in order to reserve a place or seat.
  • 29) How do I reset my password?

    Any user can reset his/her password by using the password reset button at the login.
  • 30) If there are changes to the Privacy Guidelines, where are they posted?

    Any changes to the Guidelines, Terms of Use or Privacy policies are entirely at the discretion of the Hub administrators. However, if we decide to change our Guidelines, privacy or other policies, we will post those changes on one or both of our websites: http://www.defeatmsa.org or http://www.brainpatient.org
  • 31) What happens if someone in my SGS violates the code of conduct?

    We have a zero tolerance policy for any illegal activity, obscenity, nudity, illegal drug use on camera or discussed in the text chat, verbal or written harassment or bullying of any sort. Any violations of these policies will result in a banning or revocation of the permission to use the GOSH, associated Hub applications, its websites or membership in Hub connected social media groups or pages. Suspected violators may also be reported to the appropriate authorities. A premise of any support group is that the members do their best to maintain a level of confidentiality. We ask you to do the same at all times on the Hub.
  • 32)Who helped create GOSH?

    The Global Online Support Hub is the brainchild of Professor Philip Fortier and Dr. Pratik Bhattacharya, Defeat MSA’s Co-Directors and other Defeat MSA Board Members. Our WebRTC platform partner is TokBox, Inc.
    Prologic logo Prologic technologies is our Digital Hub Partner who helped us in creating the web and mobile solution for Global Online Support Hub.
    The Hub was inspired by the wisdom and longtime support of Charlene Hurley Soleau (RIP), Defeat MSA’s Patient Advocate and Board Member, who passed away in February of 2018. This Hub is dedicated to her. She lives forever in our hearts! May she soar with the angels!