Rare Disease Day - 28th February 2015

Nevus Outreach Conference in Dallas

Nevus Outreach ConferenceOver the past 12 months Caring Matters Now has been developing contact with Nevus Outreach, which is a US based support group for CMN. In November 2009 Mark Beckwith, the Executive Director of Nevus Outreach, attended our CMN Liverpool family day. He was so enthused having met our families and seen what our support group does, that Mark invited Dr Kinsler and myself to attend the Nevus Outreach biannual conference in the United States. The CMN trustees thought it would be worth our while to attend the 3-day conference in Dallas, as we could learn from each other, resulting in strengthening both support groups.

Dr Kinsler, my mum and I travelled over to Dallas, US, on 6th July. We spent 4 days with Nevus Outreach staff and family members who had travelled from many states in the US to be at the conference. This is the main event for families to meet each other and to gain medical advice from the world-leading CMN medical experts.

Nevus Outreach ConferenceDr Kinsler spoke twice during the conference to all those who attended, including other medics from Europe and America. She spoke confidently and passionately about her CMN research. All those listening to her were very impressed with her work. As I listened to Dr Kinsler speaking, it just re-confirmed how ‘priceless’ her CMN research is… my mum and I were very proud of her!

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