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Social Media

At the Association we use social media (mainly Twitter and Facebook) to promote our work and the amazing things our supporters do.  It’s a great way to share information, updates and exciting news for everything we’re involved in.

You can follow us on Twitter and Facebook to keep up to date and join the conversation.

We think it’s important that you know how we run our social accounts so we’ve provided some information below:

Our social media hours

Our main social media hours are 9.00am to 5.30pm, Monday to Friday.  For those that follow us already you’ll know that we do also post and respond to posts outside of these hours, but this is on a best endeavours basis and will be limited.

Our accounts

The Association’s main account is @mndassoc for Twitter and @mndassociation for Facebook.

We’ve also got specific accounts focused on:

You can follow any and all of these to read information that focuses on the specific area.  Our main account will often also share posts from these accounts to ensure we reach as many followers as possible.

Staff accounts

Some of our staff have created accounts to help spread the word or share information that they feel is useful to the MND community.  These accounts are typically something like @name_MND. These are not official MND Association accounts. Staff have been provided with guidance to ensure social media is used to the best advantage.

Branches and Groups, Volunteers and Campaigns Contacts

Many of our supporters use social media, especially Twitter, to promote and share their work. Everything they say is their own opinion and we don’t monitor or moderate this in anyway.

If you’ve got concerns or a complaint

We use social media to share good news, promote the work that we and our supporters are doing and to post content that raises awareness of MND and supports our vision of a world free from MND.

Sometimes you may want to raise a concern or complaint with us using social media. You should do this via our main accounts (including if the concern or complaint you have relates to a post from one of our staff accounts).  Depending on your concern we may choose to contact you via direct message or an alternative route (e.g. email). We think social media works best when we share and promote good news. It’s often very difficult to resolve a concern within 140 characters (which is the limit on Twitter) which is why we prefer to discuss offline.

Sometimes we may be limited in what we can share due to information being covered under the data protection act.

How to raise your concerns:

  1. Check on this website to see if there is any further information that may help to address your concern.
  2. Ideally, direct message via social media or email your concern to enquiries@mndassociation.org.  That way, we can find the best team and information to respond to you.
  3. Give us some time.  We can’t monitor social media 24/7 so please give us time during our main social media hours to respond. As we have small team, we will not always be able to answer immediately.

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