Rare Disease Day - 28th February 2015

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 life threatening condition and improve treatments for patients. Jodi and Lucy will also be attending to increase awareness of the Caring Matters Now support group and to learn more about the International support groups available. Potentially we could establish a worldwide network and share best practices to help all of those affected by CMN, Internationally.

Report by Lucy Hardwidge

Dr Kinsler, Jodi & Lucy

Dr Kinsler, Jodi & Lucy

Jodi, Dr Kinsler and I travelled over to Tubingen, Germany for the first ever dedicated CMN Conference. It was a great experience to be a part of this exceptional event, rubbing shoulders with representatives and trainees from a wide range of specialist fields.

One specialist in particular both Jodi and I were very pleased to see was Dr Atherton, the former leading medical Congenital Melanocytic Naevus (CMN) skin specialist in the UK who managed the original CMN registry prior to Dr Kinsler. Dr Atherton was the first consultant I saw who could provide answers to my questions when my daughter Fay was born with CMN six years ago and for Jodi it was fifteen years ago. We owe a great deal of gratitude to Dr Atherton for his interest in CMN and for suggesting and supporting Jodi and her parents in setting up a support group. That was how Caring Matters Now evolved. It was a priviledge for me to be surrounded by such good company with Jodi, Dr Atherton and Dr Kinsler.

Presentations were held from lunchtime on the Friday through until late Saturday afternoon and you can see from the attached agenda the variation of topics discussed and the collaboration of expertise from many different countries. Dr Kinsler spoke very passionately about the CMN condition and her research and it was so encouraging to see the interest shown from other specialists in her work. We are very fortunate and honoured to have Dr Kinsler, she is a huge asset to the group and to the pioneering research programme.

Lucy, Dr Kinsler, Dr Atherton & Jodi

Lucy, Dr Kinsler, Dr Atherton & Jodi

Jodi and I were there to represent Caring Matters Now and we set about meeting with other patient support organisations from Spain, The Netherlands, France, Portugal, Israel, USA and Australia. It was very interesting to see what the other organisations do and to share information and ideas between us. Collaborating with other organisations can only strengthen us as a support group and between us we can build a strong network of individual support groups for all of those families worldwide affected by CMN.

Discussions are in progress to maybe create a global umbrella organisation where there is an easily located webpage which then features all the different global organisations and links to these individual groups. We can also share news and features with one another and promote our family gatherings and events.

Following the success and acknowledgement of our support materials in the US when Jodi attended the Nevus Outreach Conference, we took with us some samples of the materials we produce and set up a small display at the European Conference. We came home with nothing as all of the items on the display were taken which was hugely encouraging.

Thank you to Nevus Outreach for sponsoring our participation at the event and we look forward to future conferences and to building partnerships with other international groups.

You can read more about the conference on the Nevus Outreach website.

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