The social media team at the Multiple System Atrophy Trust (MSA Trust) manages our official accounts on platforms including Facebook, X (Twitter), Instagram, LinkedIn, Tik Tok, BlueSky, HealthUnlocked and YouTube.
Our channels aim to share information, updates and stories about living with multiple system atrophy (MSA). We also use them to raise awareness of MSA and the Trust, raise funds, highlight fundraising initiatives, provide support for people affected by MSA and their carers and highlight the work of our charity and partners.
We’re here to offer support and information. We ask that everyone who interacts with our pages does so with kindness and respect. To help keep our online spaces safe and supportive, we ask all users to follow these house rules:
Be respectful
- We ask everyone to treat others with compassion and respect. Our community includes people living with MSA, carers, family members, volunteers and professionals. Please be mindful that many people visiting our pages may be affected by MSA personally and may share differing views to you.
Follow platform rules
- All users must comply with the terms of use of each social media platform, as well as these MSA Trust house rules.
Be responsible
- You are responsible for any content you post, including comments, images and links you share. Only post information you are comfortable sharing publicly.
- The MSA Trust is not responsible for posts made by members of the community on each platform.
We will remove or report inappropriate content
- We may remove posts, comments or messages (in whole or in part), and may block or report users who post content that we believe is:
- Abusive, offensive, or obscene
- Discriminatory or hateful toward an individual or group
- Misleading or deceptive
- In violation of copyright or other legal rights
- Promoting a product or posting an advertisement
- In breach of any law or regulation
- Spam or repeated negative posts designed to provoke or disrupt discussion.
- Users who repeatedly post inappropriate or abusive content will be blocked and/or reported to the relevant platform.
- We will not tolerate or respond to abusive messages directed at our team, members of the MSA community or others.
- The decision from MSA Trust staff on the deletion or the removal of a post is final.
Medical and treatment information disclaimer
- Users may describe their own experiences of using alternative therapies or treatments. However, these will be personal and should not imply any endorsement by the MSA Trust . We will only post details of treatments where there is research-based evidence to show that they are beneficial for people living with MSA.
- Users should always discuss their personal medical situation with their consultant and health care professionals. Information given on our social media accounts should never be used as a substitute for medical advice from your Doctor, Specialist or Health Care Professional.
Getting in touch
- We understand that many people contact us for support and information about MSA.
- We will do our best to respond to enquiries within two working days.
- While we can offer general guidance and signposting, we are not able to provide individual medical advice.
- Our social media accounts are not monitored continuously. Offensive or inappropriate posts may not be seen or removed immediately.
- Our working hours are Monday-Thursday, 9:00am – 5:00pm and Friday, 9:00am – 4:00pm. Messages received outside these hours will be answered as soon as possible when we are back online.
A safe and supportive space
- Our social media channels are a place for community, support and awareness, not for political debate. We therefore cannot respond to or host political comments or discussions.
- Thank you for helping us keep our online community safe, positive, and supportive for everyone affected by multiple system atrophy.