Rare Disease Day - 28th February 2015

Adult Support

By Jodi Whitehouse

Over the past couple of years, the CMN trustees have wanted to develop our adult support for those adults affected by Congenital Melanocytic Naevi. We have made a start on developing this area by holding an annual adult gathering, which includes Dr Kinsler attending to present her work. This also provides a great opportunity for all the adults affected to enjoy some social time together in a relaxed environment and chat openly about their stories and experiences. We have been able to gain some insight and information into what we need to be providing as a support group and what is needed for our adults with CMN.

We now want to take some of the knowledge we have and further develop our adult support, but to do this we need a dedicated adult support contact. The idea of the role is to involve this dedicated CMN adult support contact into talking and developing relations with our adult members to establish what they would like in terms of support. They will be the main contact person for our adult members to get in touch with when they need to be listened to. They will also be the main point of contact for when we organise adult events, such as the adult gathering.

The adult support contact would be a part of the volunteer support contact team. They would also develop the policies and procedures we currently have in place and keep this updated based on how this area of the support group develops.

I am delighted to introduce Gemma to the role. Gemma is a young adult with CMN who is keen to assist us in developing this area of support and is looking forward to meeting and getting to know more of our adult members. Please feel free to email gemma@caringmattersnow.co.uk, introducing yourself and maybe providing some suggestions on what it is that you would like to see offered to adults with CMN.

Read Gemma’s story here.

Welcome to the team Gemma.

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