ONLINE SUPPORT GROUP POLICIES
Content on Defeat MSA Alliance associated charity websites and social media pages
are contributed by volunteers and other users and thus, cannot be regarded as medical
advice. The contents of associated pages and social media (such as text, graphics,
images, information obtained from third parties, etc.), and other material contained on
its websites (hereinafter “Content”) are for informational purposes only. The Content is
not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Always seek the advice of your physician or other qualified healthcare provider with any
questions you may have regarding a medical condition. Never disregard professional
medical advice or delay in seeking such advice because of something you have read on
any social media platform or any Defeat MSA Alliance associated website.
Reliance on any information and/or Content provided by Defeat MSA volunteers,
moderators, administrators or others appearing on Defeat MSA associated websites
and social media platforms at the invitation of the Defeat MSA administrators or other
visitors is solely at your own risk. Defeat MSA volunteer staff takes no responsibility for,
does not expressly or implicitly endorse, and does not assume any liability for, any
content on any Defeat MSA website or associated social media platform. Further, there
are no representations or warranties of any kind, express or implied with respect to any
content.
Participation in any research studies that one may learn about via perusing a Defeat
MSA associated website or social media platform is completely optional. Defeat MSA
Alliance’s only function is to disseminate information. It cannot recommend any course
of treatment or any particular diagnosis.
Our Data Collection Policy
For our privacy policy, please refer to this page on our privacy guidelines.
If you have any questions about our privacy policy, please contact info@defeatmsa.org
Your Privacy Choices
Before posting a message, every user should be aware that posting might share
possibly confidential information to be linked to personal identifiers (the username and
Facebook profile information a member chooses to provide). This information will
become available to others, and no one knows the identity or the motivation of those
accessing the information. Posted messages can also be found by search engines (e.g.,
Google). It is therefore important to be careful when disseminating personal information
(for example name or phone number) or when it concerns the privacy of relatives,
especially children. In addition, every member should be aware that some of their own
posts can be included in the responses of other participants, and can, therefore, could
be impossible to remove from Facebook date collection processes. It is advisable to
weigh the potential benefits of participation in this online community with attendant risks
to the confidentiality of information. Careful consideration should be given by users
before agreeing to disclose location any information. Due to the nature of the diseases
as being rare and the possible isolation of members, by disclosing location information,
it may be possible that users can be identified.
Your Commitments to Defeat MSA associated charities:
We are committed to keeping Defeat MSA associated websites and social media
platforms, a safe and supportive environment for everyone, so in using any of these
websites or platforms, you are making the following commitments:
• You will not act under a pseudonym in any of the groups or on any pages.
• You will not offer medical advice:
Messages on groups or on pages must be for informational purposes only.
You must not offer, or be perceived to be offering, medical advice. The
information posted by users is often partial and may only cover one aspect
of a person’s illness(es) or experience(s). You will do your best to avoid
generalizing from personal experience(s) and will clearly indicate if and
when you are sharing your own personal story. Any information relating to
therapy or diagnosis, even if it comes from users who could be considered
to have ‘expert knowledge’ of a disease, must be received with caution.
Only your physician is authorized to offer and/or confirm medical diagnosis
and/or advice.
• You will not recommend treatments:
Treatment options should only be provided by a qualified physician and
should depend on the particulars of everyone’s medical history. The
treatment choices of other users must be respected, and group members
should never claim that a specific treatment is the only one that is effective
for a particular disease. Group members must also be careful when
sharing their experience(s) with products and/or practices that have not
been properly evaluated for the disease or symptom that is the subject of
discussion within the group.
• You will not post any unauthorized advertising messages:
Any form of advertising is not allowed in the groups. This applies with
respect to treatments, clinical trials, registries, physicians, care facilities,
etc.
• You will be respectful of other group members. You will do this by:
• respecting the opinions, beliefs, and differences of other members.
• being polite and keeping a measured tone in all exchanges.
• refraining from undermining the morale of other members.
• not posting hateful, threatening, violent or otherwise inappropriate
content.
• not spreading rumors or content that may harm or endanger the health
and safety of others.
• You will not post content or engage in behavior that is illegal:
All members must comply with the laws of their country. Particular
emphasis must be on avoiding the spread of illegal content, respecting the
privacy of other members, and protecting copyright and other intellectual
property laws.
• You will not collect users’ content or information from this website
for your own personal or commercial use. This applies to any and
all means of collection (e.g. manual, automated, direct and/or
indirect).
Administrators and other volunteers reserve the right to delete postings or
remove any member or participant who violates these restrictions and
commitments, and this may be done in their sole and exclusive discretion.
Administrators may, in accordance with their legal obligations, act quickly
to remove data or make access impossible when they have knowledge
from a third party that a member has circulated illegal content via Defeat
MSA Alliance associated groups or pages.
PURPOSE:
The MSA Caregivers Video SGS (“Support Group Session”) aims to provide a regular way for
Caregivers Journey members to come together to support one another. This is a PRIVATE messenger
room chat. No conversation is recorded, available after the chat or available to others outside the group.
All discussion in this group is confidential. No images or recordings may be taken.
For a list of those groups, visit here: https://defeatmsa.org/facebook-groups/
OR call us: 1 855 KICK-MSA (1 855 542-5672)
GROUP GUIDELINES:
1. All comments must be respectful of all members. Participation in the group is at the discretion of the
group administrators, moderators or other volunteers coordinated by Defeat MSA. We have zero
tolerance for any form of bullying whatsoever.
2. This forum may not be used for personal fundraising, sales, solicitation by individuals or groups, other
than official Defeat MSA sponsored activities.
3. Members may not lobby others in the group to fund a specific researcher, his/her particular type of
research or his/her lab over others. Postings that excessively support particular researchers, their
research or their lab may be removed at the discretion of group admins, Defeat MSA staff or volunteers.
4. While Defeat MSA Alliance appreciates the good intentions of the MSA community, the sharing of
prescribed medication or treatments, in most jurisdictions, violates the law, thus this group cannot be
used for such activity.
5. Participation in and/or admission to the group is entirely at the discretion of group administrators.
Group admins are not obligated to provide reasons for not admitting an invitee, terminating a member
or removing a post. However, due process will be followed in all cases.
6. Please avoid advertising, promoting other groups, suggesting members join other groups, using the
group to fundraise for other organizations or to fundraise privately for individuals, for specific
researchers or for the selling of their books, their treatment plans or diet plans.
7. None of the administrators or group members are trained professionals, thus, we cannot provide
personal, marriage or family counseling.\
8. Your participation in any of our support group sessions implies that you consent to all our support
guidelines listed here:
Disclaimer:
The material in this group is for informational purposes only and should not be used to
diagnose or recommend treatment. Defeat MSA Alliance makes no warranty as to the accuracy or
relevance of the information in this group. Every member should consult with a doctor or other health
care professional for diagnosis and/or treatment.
If you find that you are experiencing depression, then we strongly recommend that you to seek help.
Anyone that posts anything that gives any hint that they may harm themselves or other people, that
posting/individual will be referred to appropriate authorities.
We are all in this together! Let’s speak as a true family – with one voice and one heart!
Group Sponsor: www.DefeatMSA.org