Get Involved with the Cholesteatoma Association
Have a look below at some of the ideas how you can get involved with the Cholesteatoma Association!
Raise awareness of cholesteatoma: download our two posters to take to your ENT and Audiology departments when you next visit.
Get involved by submitting your story!
Do you have a story to tell others? Could you help and support others? Do you want to highlight particular aspects of having cholesteatoma? Here are some cholesteatoma stories from people around at different stages on their cholesteatoma journey.
Connect Me Map
It is important to know that you are not alone with this diagnosis. This worldwide disease map currently shows hundreds of people effected by cholesteatoma. The map enables you to connect with others in your area or further a field. It has a great feature where you can write three things that have most helped you. To add yourself to the map, visit www.diseasemaps.org
We aim to attend the “International Cholesteatoma Conference in Scotland in June 2016 and we need to raise money to cover accommodation expenses as well as marketing material to promote the International Cholesteatoma Conference.
Our objectives are to network with ENT consultants, find consultants interested in supporting the group, raise awareness of the patient perspective of living with cholesteatoma, discover the latest research, and raise awareness of the website and the International Cholesteatoma Association.
Could you get involved and hold a cake sale, run a 5k or set up a monthly Direct Debit for £2?
We will develop the donation page for the website in the near future, but don’t let that stop you planning any fundraising initiatives now!
COMING SOON! Regional Support Co-ordinators
We are developing Regional Support Co-ordinators to support our cholesteatoma community.
Being a Regional Support Co-ordinator will involve acting as a representative of the International Cholesteatoma Association for a regional area.
This will initially involve:
- Acting as a contact point for the International Cholesteatoma Association members within the defined region and providing them with support and advice using a ctoma.org.uk 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.
We have developed a job role for a Regional Support Co-ordinator. If you would like to be a Regional Support Co-ordinator, send an Email to: email@example.com outlining what experience you can bring, and why you are interested in this role.