Rare Disease Day - 28th February 2015

Who We Are

The Caring Matters Now support group was initially set up in 1998 by Jodi Unsworth, at the time a 17 year old patient at Great Ormond Street Hospital with extensive CMN. Jodi and her parents provided support to those similarly affected by the condition. This was the first known and only dedicated support group in the UK. It was clear that those with CMN and their families were in desperate need of accurate information, advice and contact with others affected by the same disorder.

Today, the CMN support group has over 300 families registered and 11 UK support contacts in operation. A small team of those with CMN and parents of children with CMN run the support group which is now a registered charity with the UK Charity Commissions. The charity primarily covers those living in the UK but is also happy to provide support and information to families living internationally. Individuals and/or families only need to register on-line to be on the distribution list for newsletters and to be put in touch with a support contact.

The support group has three main aims which are:

  • To support those affected by CMN
  • To raise awareness about CMN
  • To raise funds for the CMN research

With partnerships with other support groups dealing with disfigurements and help from those that have grown up with CMN, we provide information, advice and personal support and reach out to all those affected by the conditon. We currently host family days across the UK to give those with CMN, their parents and siblings the opportunity to get together, meet others affected by the same disorder, share stories and experiences. The family days also offer the chance to meet and talk to medical professionals. Presentations are made to update all about both the charity’s activities and the latest developments on the research programme. The family days are relaxed, fun and informative – many friendships are formed here.

Caring Matters Now produces and distributes a number of resource materials to the public and members to increase awareness about CMN. These are all available to download from the website.

Members actively fundraise as Caring Matters Now is a significant funding source for the CMN research programme taking place at Great Ormond Street Hospital in London. To date, the cause of CMN has still yet to be determined and treatment options are very limited.

The future holds a lot of development for Caring Matters Now including an aim to increase collaboration with international CMN support groups to establish a worldwide network, share best practices and ultimately to find effective treatments for those with CMN.

The Caring Matters Now team hope you find the CMN website of great value.

Thank you