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 on 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.
2) RESEARCH PARTICIPATION:
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.
3) DATA POLICY & PRIVACY:
Before posting a message, every user should be aware that posting might share possibly confidential information to be linked to personal identifiers (the user name 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.
4) YOUR COMMITMENTS TO DEFEAT MSA UNITED 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:
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.
Treatment options should only be provided by a qualified physician and should depend on the particulars of each individual’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.
Any form of advertising is not allowed in the groups. This applies with respect to treatments, clinical trials, registries, physicians, care facilities, etc.
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.
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.
5) VIDEO CHAT SUPPORT MEETINGS:
As of August 20, Defeat MSA United International charities sponsors the following video chat (“Support Group Sessions” or SGS). These are peer support meetings.
MSA Life Affirmations Video Chat Meeting (Patients Only – Global)
MSA Caregivers Journey Video Chat Meeting (Current Caregivers Only – Global)
MSA Current Spouses Video Chat Meeting (Current Spouses Only – Global)
MSA AU-NZ Down Under Video Chat Meeting (Patients Only)
MSA NZ-AU Down Under Video Chat Meeting (Caregivers Only)
MSA Canada Video Chat Meeting (Patients & Caregivers)
MSA Grief Peer Video Chat Meeting
MSA Widows/Widowers Video Chat Meeting
All Defeat MSA Support Group Sessions aim to provide a regular way for members to come together to support one another. Each SGS 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 complete list of those Facebook groups (in which the video chat Support Group Sessions take place), visit here: https://defeatmsa.org/patient-programs/#facebook-online-groups
OR call us: 1 855 KICK-MSA (1 855 542-5672)
6) GROUP GUIDELINES:
We are all in this together! Let’s speak as a true family – with one voice and one heart!