The Role

Being a Regional Coordinator will involve acting as a representative of the International Cholesteatoma Association for a regional area.


This will initially involve:


– Acting as a point of contact for the International Cholesteatoma Association members within the defined region and providing them with support and advice using a e-mail address

– Arranging informal meetings so members have the opportunity to meet, share experiences and provide one another with support and advice. If there are a number of children in your region, perhaps organising a play event so the children can meet others with cholesteatoma.

– Liaising with ENT in your area to raise awareness of cholesteatoma. This could involve asking them to display a poster, or perhaps asking to talk face-to-face to consultants about the issues caused by cholesteatoma.

– Identifying any inconsistencies in experiences from people in your area, or any major concerns, and escalating them up to the management committee.


The role may evolve as the organisation moves forward, and as Regional Co-ordinators suggest new ways of working.



 This will vary according to the number of members in your region, but as far as communicating with members goes, we wouldn’t expect you to commit more than a couple of hours per week. We will leave the matter of when, where and how often you hold members’ meetings to you, and it would be your responsibility to arrange these and communicate details to members in your region.



We realise that the areas set out on our Regional Hub map are quite large, and we would like to break these down into smaller regions as more volunteers come forwards. We will not expect you to travel long distances to hold meetings. If at any point you are having difficulties, require help or advice, or the work is becoming unmanageable, then please let us know so that we can help. We are already thinking about how we might offer training for Regional Hub members in future, and what form this might take, once we have resource to allow us to do so.





Benefits to you

As someone who is affected by cholesteatoma, this is an opportunity for you to connect with other people in the same position and potentially gain as much as you give to them. In addition, this is a new role within a new organisation so you will have the opportunity to use your own ideas and initiative in helping take forward our be playing an important part in our pioneering work.