Social Media Guidelines

We, The Tuberous Sclerosis Association, want to help create a community of people affected by Tuberous Sclerosis Complex as part of our mission to support families, raise awareness and fund research. Therefore, we ask that all those engaging with our social media take the time to read through the Community Guidelines we have put together so that we all know the most appropriate ways to engage with each other.


Here are our guiding principles:

  • Please use your real name, account or identity when posting on the TSA Facebook page or Twitter so that members know who you are.
  • You are responsible for what you write entirely, this means libel and copyright laws on any public forum. We do not check or moderate posts, comments or other materials before they ‘go live’ and these are open public forums, so therefore we hold no responsibility and cannot be held liable for this content. However, if we do find unlawful, irresponsible, harmful or bullying posts on our pages, we will remove them as quickly as is practically possible.
  • The discussions on the TSA hosted sites and social media belong to the community. The TSA provides a forum to enable discussions to flourish. The community relies on its members being courteous and respectful to one another.
  • Please do not use TSA sites to post materials that could be interpreted as advertising, selling or soliciting, spam or self-publicity for commercial or business purposes. We will remove such materials.
  • Please only tag or post photos and videos that you have the right to post.
  • Take care online, remember this is a public forum so be careful about what personal or sensitive information you disclose about yourself and your family.

You can let us know if you suspect that a user is breaking our Community Guidelines, or if you have any concerns about the use or the participation in the community by CONTACTING US: If you ignore or fail to comply with our Community Guidelines we reserve the right to block you from accessing TSA public platforms in the future.

The TSA’s commitment to Facebook and Twitter

It is always recommended that if you need support from a qualified TSA staff member, you should CONTACT THE TSA directly.

However, in the event that somebody posts on the Facebook page with a support, research, fundraising or membership query, the TSA will direct that person to the relevant section of the TSA website for further information and advice. We always aim to respond within 48-72 hours.

The TSA will post on the Facebook site and through Twitter, and these will be clearly visible that they come from the TSA as an organisation – not a community member.

We will revisit these guidelines on a regular basis and reserve the right to change and update them as needed. We will post on our social media platforms when we have amended the guidelines so that the community is always kept up to date.