Regional Support Groups
Our network of Regional Support Groups consists of a number of groups co-ordinated by volunteers around the country. They meet in a wide variety of venues – from the co-ordinator’s home, to the local pub, to disability resource centres.
Currently some groups are meeting on-line due to the world wide pandemic.
Check the side menu for the list of local groups – they’ll be pleased to welcome you!
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How to form a Local Group
If you have ever thought about being a co-ordinator and starting a local group in your area have a read of this page. Do get in touch if you have any other questions and concerns.
Very common questions we are asked are:
- Where should I hold a group meeting?
- How do I start?
- What are my responsibilities to the main charity?
The first thing is to get in touch with the office by telephone, email or through the post
We will help you as much as we can, to start with, these points may help:
You can hold a meeting in any suitable venue; your home, a local community hall, the local pub. Remember, the venue must be as accessible as possible for all degrees of CMT.
To launch the group, the office staff will contact (through email or mail) to all members in your area initially, using the main Membership database. There are members, of course, who have stated that they do not want to participate in local groups, and these would be automatically excluded. You can draft the letter that is sent, and it will contain your contact details – hopefully, those interested will contact you direct from then onward.
We look after the finances on your group’s behalf, and Charcot-Marie-Tooth UK will provide you with up to £75 to help kick-start the group (for room hire, sandwiches etc.)
You do not need to commit to raising funds, this is not the purpose of the support groups, however if you want to fundraise, we would be delighted. In the main the groups are social groups, a place to meet others with CMT to chat and support each other.
You do not necessarily need to arrange speakers, or events – many members are happy to meet for a cup of tea and a natter.
If a trustee can attend your first meeting to give a little support we will arrange that.
We have Local group guidelines for you to read before you make any decisions and these give a little more detail on what is required of you. Remember, there are charity law obligations which you as a group leader would be asked to abide by. However, all this information will be made clear to you when you agree to become a co-ordinator.
Local Groups Needed:
Where do we need to see more of you?
Devon, East Midlands, West/East Sussex, Wiltshire, Cambridgeshire and East Anglia are all areas which have relatively large numbers of members but do not have groups.
We hope this all gives you an idea about what’s involved and don’t hesitate to contact us for more information.