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28th September 2012
You are invited to become a member of the TREAT-NMD Alliance

We would like to recognise the valuable work in the neuromuscular field that many organizations, institutions, companies and individuals are undertaking with an invitation to become a member of the new TREAT-NMD Alliance.

Members benefit from closer ties with the network and we will work together with them to help implement the goals, from improved patient care to specialist scientific training, worldwide.

We developed a new charter and governance structure, enabling the network to grow and develop scientifically and geographically. The finalised charter is now available and applicants are asked to agree to adhere to the charter to become a member of the Alliance. You need to apply, even if you have been a member or partner of TREAT-NMD in the past.

On behalf of the Executive Committee, we encourage you to become a member of the new TREAT-NMD Alliance. Please fill in the online application form at your earliest convenience.

Annemieke and Hanns

TREAT-NMD future directions meeting - update
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The Executive Committee of the TREAT-NMD Alliance will meet during the World Muscle Society Congress in Perth, Western Australia, and invites interested colleagues to join the discussion.

The elected Executive Committee, chaired by Hanns Lochmuller and Annemieke Aartsma-Rus, will take this opportunity to discuss the priorities and future direction of the network face to face. New challenges and opportunities in translational research for neuromuscular disorders will be addressed, including joint grants, industry collaborations, a world-wide reach and initiatives in new disease areas.

The meeting is scheduled for Thursday 11th October from 5:30pm to 7:30pm in the Perth Convention Exhibition Centre. Meeting details along with the finalised agenda can be found on this page.

Please note: Numbers for this meeting are limited and interested parties should contact info@treat-nmd.eu by Wednesday 4th October regarding attendance.

GNE Myopathy and Congential Myasthenic Syndromes
sections now live
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Two new disease sections have be launched on the TREAT-NMD website since our last newsletter, namely GNE Myopathy and Congenital Myasthenic Syndromes (CMS).

GNE myopathy is also known as Hereditary inclusion body myopathy (HIBM), Distal myopathy with rimmed vacuoles (DMRV), Nonaka distal myopathy and Quadriceps-sparing myopathy. GNE myopathy was originally describe in Israel and Japan, but is a world-wide disorder that exists in many countries and in different ethnic populations. GNE myopathy is a rare disease affecting approximately 1 patient in 1 million people world-wide and leads to weakness and wasting of muscles in the legs and arms often resulting to loss of ambulation in later life.

Congenital Myasthenic Syndromes (CMS) is the name for a group of inherited disorders of the neuromuscular junction which have certain clinical and genetic features in common. Muscle weakness is common in CMS, but highly variable from hour to hour, day to day or month to month. Many patients with CMS can be effectively treated with a standard medication. CMS is a rare condition with approximately 1 patient in 150,000  people world-wide.

More information about both diseases can now be found on our website, select the blue disease information button on the menu bar.

First joint EuroBioBank and Telethon biobanking meeting
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The first joint EuroBioBank-Telethon Network of Genetic Biobanks will be held in Milan,Italy and it is scheduled for 12-13 November 2012.

About 25 scientists managing European Biobanks that collect, store and distribute high quality biological materials from patients affected by genetic/rare diseases to the scientific community will be involved.

Chinese DMD registry officially launched
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The Chinese registry for DMD was officially launched on the 1st September at the China Armed Police General Hospital, Beijing. Information gathered from the Chinese registry will held securely and meets the mandatory dataset requirements so allowing it to be regularly uploaded to the TREAT-NMD global registry. Doctors from the hospital’s Neurology department are working with the China DMD care and support association and already have over 100 registrations via the website www.dmd-registry.com

Prior to the registry's launch a two day conference held in the China Armed Police General Hospital was organised. This resulted in over 200 patient representatives meeting with medical experts from across China and beyond to learn about the latest medical developments within DMD, and also pose questions. Patients and Chinese Physical therapists also had the opportunity to learn about various stages of DMD and appropriate therapies from four young men with the disease who attended.

Registration open for EPNS researchers' meeting
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The European Paediatric Neurology Society's Researcher Meeting has been scheduled for 14th & 15th December 2012 in Rheinfelden, Germany close to Basel.

The main topics for talks are epilepsy and ataxia. Whilst the following research groups will also form part of the meeting, neurometabolic diseases, autoimmune-inflammatory-diseases, neonatal neurology, neurodegeneration and neuroprotection, epilepsy, genetics, developmental neurology, ataxia and neuromuscular diseases.

If you wish to express an interest in participating in the neuromuscular disease research group please contact one of the following research heads Thomas Sejersen, Nathalie Goemans, Markus Schülke or Volker Straub.

Full programme details about the meeting and registration information can be found here.

Job Opportunity : Research Infrastructure
Projects Manager with EURORDIS
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The main scope of this post covers the management of activities related to EURORDIS’ participation to the projects EPIRARE and RD-CONNECT focused on patient registries, biobanks, clinical bioinformatics, and -omics in the field of rare disease research.

Comprehensive details about this position along with the benefits it attracts and how to apply can be found by downloading the job description. This position is based in Paris and has a potential starting date of 1st November 2012. The deadline for applications is 12th October 2012.

Biomarkers for NMDs to be discussed with industry
representatives at the next BIO-NMD meeting
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BIO-NMD is an EU funded research project focusing on:

- Duchenne muscular dystrophy
- Becker muscular dystrophy
- Ullrich congenital muscular dystrophy
- Bethlem myopathy

The project is using OMIC sciences to search for non-invasive biomarkers in people with these conditions which may help with diagnosis, disease monitoring and therapy development.  As BIO-NMD approaches the end of its third year, the project’s partners would like to invite representatives from industry to a special session as part of their next meeting. The objective is to facilitate discussions about the research and possible ways to collaborate in order to maximise the impact on patient care in the neuromuscular field.

As a result an Industry Session in Rome on 14 November 2012 has been organised.

If you are interested in attending, please complete the online registration form. Responses will only be shared with the BIO-NMD project partners. A flyer with more detail is available to download here and project coordinator, Professor Alessandra Ferlini or the Communications Officer, Cathy Turner are happy to answer any questions.

BIO-NMD is funded under the EU FP7 scheme and is coordinated by Professor Alessandra Ferlini at the University of Ferrara. Further information about the project, relevant publications and details about the participants can be found at www.bio-nmd.eu.

Upcoming meetings
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28th September 2012
TREAT-NMD newsletter - 28th September 2012
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