Rare Disease Day - 28th February 2015

Latest News

Research reveals association between red hair gene and rare birthmarks

Research reveals association between red hair gene and rare birthmarks

Research carried out at Great Ormond Street Hospital and the UCL Institute of Child Health has identified that the gene causing red hair – melanocortin-1-receptor (MC1R) – is more common in children with Congenital Melanocytic Naevi (CMN), a rare form of birthmark. CMN are rare brown or black birthmarks which cover up to 80% of […]

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Mount Kilimanjaro – Done and Dusted!

Mount Kilimanjaro – Done and Dusted!

I am VERY pleased to announce that Mount Kilimanjaro is done and dusted! How amazing the experience was! It is very difficult to summarize this incredible journey, so instead I have decided to include the daily blog updates in the newsletter, along with some photographs. I do hope you enjoy reading all about our adventure! […]

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Participation at the 2011 European CMN Conference

Dr Kinsler will be speaking at the 2011 European CMN Conference to be held in Tübingen, Germany on 6th and 7th May 2011. She will be accompanied by many International Specialists who are focussed on Congential Melanocytic Naevi and Neurocutaneous Melanocytosis. Such collaboration of expertise will hopefully increase the understanding of this rare and potentially […]

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Jeans for Genes Awards Grant

Jeans for Genes Awards Grant

We are very pleased to announce that Caring Matters Now has been awarded a £4,000 grant from Jeans for Genes — a national children’s charity which raises money for the care of children with genetic disorders. In return for the grant, we need to raise awareness about Jeans for Genes Day and motivate the public […]

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Nevus Outreach Conference in Dallas

Over 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 […]

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Exciting Developments at Caring Matters Now

Well, as you may have already seen the Caring Matters Now Support Group has developed immensely over the past 2 years, thanks to all the hard work and commitment of the volunteer Trustees, support contacts and the CMN members. The fundraising efforts of all the CMN families has been tremendous and as a result, has […]

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The Pink Chicks running for CMN!

The Pink Chicks running for CMN!

In a mad moment Susanna and Clare have decided to make a difference by completing 10 runs and raising £10,000 for Caring Matters Now over a 12 month period – starting June 6th 2009 with a 5k race. The girls thought they should start off gently! As well as the running they are having fun […]

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Amy’s tea party

Amy’s tea party

On Saturday 19th July, Amy Gollop, along with her mum and dad, arranged a tea party to help raise funds for the Caring Matters Now Support Group. Amy sold tickets to family and friends for £2. Amy sold cakes along with various crafts and art-work designed by Amy’s aunt and friend which were also available […]

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Wellcome Trust grant awarded to Dr Kinsler and the CMN medical research!

Wellcome Trust grant awarded to Dr Kinsler and the CMN medical research!

Dr. Kinsler has been awarded a grant by the Wellcome Trust to fund research into CMNs until August 2012. The Wellcome trust is a UK charity organization that funds innovative biomedical research to support the brightest scientists with the best ideas. The grants awarded are hotly contested with many more applicants than grants given out. […]

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Fay’s fundraising coffee morning news

Fay’s fundraising coffee morning news

As part of the national coffee morning for Caring Matters Now I decided to hold my own coffee morning at home and invite a few friends!! Well, the numbers increased to over 30 and my house was bursting at the seams with friends, family and neighbours all wanting to give their support to a charity […]

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Rachel walks for CMN

Rachel walks for CMN

On Saturday 11th April 2009, Rachel Ilhan raised over £500 for the CMN research by walking 5 miles along the English coast. Rachel is 11 years old and has CMN covering her back and stomach. Rachel’s mum, Wendy, said “Rachel is a happy, confident, outgoing 11 year old who just happens to have CMN.”. When […]

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Caring Matters Now receives £4000 from Jeans for Genes

Caring Matters Now receives £4000 from Jeans for Genes

Caring Matters Now has been selected as recipient of a £4,000 grant from Jeans for Genes — a national children’s charity which raises money for the care of children with genetic disorders. Every half an hour a baby is born in the UK with a genetic birth defect or genetic disorder which could seriously affect […]

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Watch Jodi and Dr Kinsler’s interview on ITV’s This Morning

Watch Jodi and Dr Kinsler’s interview on ITV’s This Morning

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Help Colin raise funds for the Caring Matters Now Support Group

Help Colin raise funds for the Caring Matters Now Support Group

Even amongst health professionals, awareness of CMN is low because it is a rare condition, so our first challenge as parents was to find information about the condition and what treatments were available. Fortunately, we discovered the Caring Matters Now website and were directed to the centre of expertise at Great Ormond Street Hospital led […]

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