Rare Disease Day - 28th February 2015

International CMN Experts Conference – Our Review

28th-30th September 2013

Last month, Caring Matters Now had the great honour of being a sponsor for the 2013 International CMN Experts Conference, which took place in Marseille. The meeting was held over 3 days, whereby the leading CMN medical experts from around the world shared their understandings of CMN and presented any CMN research findings they had gained in recent years.

Dr Kinsler was the keynote speaker and she kickstarted the conference by presenting her most recent research findings, the cause of CMN! Her work was highly acknowledged by all the medical experts and many of them referred to her work during their own presentations.

Caring Matters Now funded the attendance of Dr Kinsler and also Dr Atherton, who founded the CMN clinic and research at Great Ormond Street Hospital many years ago. It was a delight to see Dr Atherton supporting Dr Kinsler as she presented to the medical world.

Both I and Lucy Hardwidge attended the conference, along with other patient support groups from across the world. There were in total 13 countries represented at the conference. During the 3 days, the patient support groups had time to learn from one another and present what each group offers within their own countries. Lucy and I were able to distribute the most recent CMN medical booklet, written by Dr Kinsler, along with all the support material we offer.

The conference was a special time for all the patient support groups, as during the conference we established a Neavus Global Network for CMN support groups.  The idea of the network, is for us all to unite and support one another in being able to offer the best possible care for all CMN sufferers across the world.  A website for the Neavus Global Network was launched during the conference, in which Caring Matters Now is featured.  The website details are www.neavusglobal.org  A board of directors were selected for the network, in which I am one of eight board members.  Therefore, I can keep you all up-to-date with the most recent global developments.  This is an exciting time for Caring Matters Now, as we are able to spread our wings and help other individuals to set up support groups within their own countries.  Who would have ever thought Caring Matters Now would go global?!

Can I again express great thanks to all our members for your continued support in raising funds for Caring Matters Now. We are able to see the impact your funds is having on advancing the research and awareness of CMN.

Thank you.

Jodi Whitehouse

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