7th September 2011
World-leading speakers at the TREAT-NMD conference

The programme for the TREAT-NMD conference has now been finalised and boasts an array of speakers who are world experts in their field. Almost fifty speakers representing Europe, the US, Japan, Australia and the World Health Organisation will converge on Geneva in November to deliver a comprehensive overview of the current state of the art in neuromuscular disease and the challenges for the future.

Sessions ranging from the latest therapies and technologies through to quality of life for patients have been planned, and keynote presentations will be delivered by Michael Rose, Benedikt Schoser, Michael Shy, Ichizo Nishino, Charles Thornton, Janbernd Kirschner, Kathryn North, Eugenio Mercuri, Stuart Elborn, Anne Rutkowski, Jerry Mendell, Serge Braun, Thomas Voit, Janice McLaughlin, Nicolas Lévy, Alessandra Ferlini, Eric Hoffman, Giuseppe Novelli, Steve Wilton, Valerie Cwik, Francesco Muntoni, Nathalie Goemans, Kathie Bishop, Aurelie Goyenvalle, Ed Connor, Pauline McCormack, Thomas Sejersen, Tom Shakespeare, Gail Geller, Pat Moeschen, Hanns Lochmüller, Francesca Pasinelli, Edward Wirth, Johnny Huard, Chris Denning, Ségolène Aymé, Gert-Jan van Ommen and Clemens Müller-Reible.

Additionally, two key forums (a patient forum chaired by Pat Furlong and an industry forum chaired by Ed Connor and Joe Irwin) will cover the perspectives of these stakeholder groups. The opening and closing keynote speeches will be delivered by Kate Bushby and Volker Straub respectively.

The quality of the program has resulted in its being awarded 18 CME credits for medical professionals. Download the programme via the “more” link below to see the complete list of sessions, presentations, presenters and the whole structure of the conference.

Infrastructure development for clinical research and
clinical trials in Duchenne muscular dystrophy in Japan
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Harumasa Nakamura M.D., visiting researcher at the TREAT-NMD coordination office in Newcastle and former administrator of REMUDY (the Japanese national registry for DMD), shares his experience and insight about the neuromuscular world in his native Japan.

Since the Family Guide for the Diagnosis and Management of Duchenne Muscular Dystrophy was launched last spring, it has been translated into many languages. Last month, the Japanese family guide was made available to download from the TREAT-NMD website. This translated version is a fantastic resource for Japanese patients, families, and doctors.

In close collaboration with TREAT-NMD, the Japanese network has developed many aspects of care and research for neuromuscular disorders, especially for DMD.

One of the most important outcomes of this collaboration to date is the Japanese national registry for DMD. Known as REMUDY (the REgistry of MUscular DYstrophy) and with a web presence at http://www.remudy.jp/, the registry is located at the National Center of Neurology and Psychiatry in Tokyo, Japan, and was launched in 2008. The registry is operated in collaboration with the Japanese Muscular Dystrophy Association and has over 750 patients registered at the present time. In addition, a phase III, randomized, double blind, placebo-controlled clinical study in subjects with DMD who have a dystrophin gene mutation amenable to an exon 51 skip has been conducted worldwide, and included Japanese trial sites. This was the first global clinical trial available to Japanese DMD patients. All of these developments demonstrate the rapid progression in the neuromuscular field throughout Japan.

TREAT-NMD has helped to support these efforts by providing an infrastructure that continues to accelerate research and therapy development and trial-readiness, increase collaboration and improve patient care. Japanese patients, families, physicians and indeed anyone affected by a neuromuscular disorder form a key part of the worldwide neuromuscular community through this collaboration with TREAT-NMD.
- Harumasa Nakamura M.D.

11th annual King's College neuromuscular disease symposium
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The eleventh annual neuromuscular disease symposium is aimed primarily at clinicians who treat patients with diseases of the peripheral nervous system and muscle, especially general adult neurologists but also clinical neurophysiologists, paediatric neurologists and clinical neuroscientists.

Scheduled to begin at 9:30am on Friday 25th November it aims to provide a clinical update as well as an introduction to the science underlying neuromuscular diseases.

Registration: Please contact Sophie Morris at (sophie.morris@kcl.ac.uk) to registration for this event. Attendance for this event is only open to those who have registered.

Standard registration fee for TREAT-NMD conference ends
15th September
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The standard registration fee for the TREAT-NMD conference ends on 15th September. We recommend that you register now to avoid having to pay the higher late fees.

The registration fee for all delegates includes entry to all official conference sessions, the exhibition and poster areas, the opening ceremony, the conference dinner as well as coffee breaks and lunches. It also includes the conference bag, containing the official conference material. Registration can be completed online on the conference website, book now to avoid disappointment!

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TREAT-NMD conference 2011
7th September 2011
TREAT-NMD newsletter - 7th September 2011