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8th April 2011
FOCUS ON: specialist neuromuscular training

Specialist clinical training is the cornerstone of best-practice care for neuromuscular disorders, while specialist scientific training is essential for researchers interested in pursuing a career in this area.

The major international neuromuscular conferences run by societies and patient organizations provide regular opportunities to hear the latest updates in neuromuscular research and management, but there are also an increasing number of opportunities for young doctors and researchers to attend intensive short courses in myology or training workshops in specific techniques. International projects such as CARE-NMD and TREAT-NMD also host individual training events focusing on best-practice care in line with international consensus guidelines.

As well as these shorter courses, a number of specialist training programmes and diplomas accredited by national societies and endorsed under schemes such as the European Neuromyology Curriculum are now becoming available. 

In this newsletter we are featuring specialist training events taking place in 2011. Further details about training opportunities across the world can be found in the "training and education" section of the TREAT-NMD website, where a full listing of neuromuscular-related meetings and events is also available. New events can be submitted for listing via this link.

Russian Spring School of Myology 2011
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18-21 April 2011 - Moscow, Russia
This is a specialist neuromuscular training course for healthcare professionals in the style of the myology summer schools that are held every year in Paris and London. Its aim is not only to provide updates on different aspects of neuromuscular disease care and research but also to encourage networking and communication between different muscle centres and disciplines, both within Russia and between Russia and other countries.

Presentations are given by expert clinicians from Russia and abroad, in Russian or English with simultaneous translation. Workshop and case study sessions enable extensive interaction between participants and allow the experts to share their knowledge and experience in resolving challenging real-life cases.

The Moscow 2011 event is co-organised by the patient organisation Nadezhda (the Russian MDA), the Moscow Region Paediatric Psychoneurological Hospital No.1 and the Moscow Research Institute of Pediatrics and Child Surgery, in collaboration with the ENMC for TREAT-NMD. Andoni Urtizberea is the international clinical lead.

Registration is open to clinicians from across Russia and other Russian-speaking countries. For further information and details of how to register, contact:

Svetlana Artemieva or Andoni Urtizberea

EPNS 2011 specialist workshop:
Advances in diagnosis and treatment of neuromuscular disorders
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10 May 2011 - Cavtat, Croatia
This workshop is held as part of the European Pediatric Neurology Society Congress. Please visit their website for further details of the whole meeting.

This workshop begins at 16:00 and is finishes at 19:30 - speakers will be as follows...


  1. Diagnosis and treatment of mitochondrial encephalomyopathies
    Rita Horváth

  2. Diagnosis and treatment of neuromuscular junction disorders in childhood
    Hanns Lochmüller

  3. Diagnosis and treatment of limb girdle muscular dystrophies in childhood
    Volker Straub

  4. Diagnosis and treatment of congenital muscular dystrophies
    Thomas Sejersen

  5. Diagnosis and treatment of congenital myopathies
    Haluk Topalo─člu
  6. Round-up and final questions
Hands-on workshop on non-invasive outcome measures for NMDs
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16-17 May and 28-29 June 2011 - Paris, France

Institut de Myologie, in partnership with TREAT-NMD:  hands-on workshop on non-invasive outcome measures for NMDs.

Two workshops led by outcome measures specialists at the Institut de Myologie (Pierre Carlier, director of the NMR laboratory and Jean-Yves Hogrel, director of the neuromuscular physiology and evaluation laboratory) will be held in Paris, the first on May 16th and 17th, immediately after the Myology 2011 congress, and the second on June 29th and 30th, immediately following the Paris Summer School of Myology.

The content of both workshops is identical - participants may select one of the two dates according to convenience.

A maximum of five participants, preferably having taken part at one of the Myology Schools, will receive intensive hands-on training in the latest non-invasive outcome measures techniques, including force measurements, activity monitoring, and quantitative NMR techniques (imaging and spectroscopy).

There is no cost for attendance. Applicants will be selected based on CV, short motivation letter and phone interview.

Brief program

Day 1: force measurements, activity monitoring

Day 2: NMR: whole body-imaging, quantitative analysis of muscle composition and of inflammation, new perspectives in spectroscopy

For further details or to express your interest, please contact Pierre Carlier.

Myograd Berlin Summer School of Myology:
basic muscle research
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13-17 June 2011 - Berlin, Germany
The sister course to the more clinically oriented Paris Summer School, this annual five-day course focuses on basic muscle science and will take place from 13-17 June 2011 at the Max-Delbrück Center for Molecular Medicine in Berlin. More than 30 teaching units will cover the whole field of basic muscle research, from muscle development to the design of novel therapies for neuromuscular disorders.

Click here to download the 2011 course program.

If you would like to join the Muscle Science Summer School in Berlin, please send your application and a short CV by mail to susanne.wissler@charite.de

The deadline for applications is 15 May 2011.

London Update in Neuromuscular Disorders 2011
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13-16 June 2011 - London, UK
This established paediatric and adult course is now in its fourth year. Disorders covered include DMD, the myotonic dystrophies, FSHD, LGMDs, inherited muscle channelopathies, mitochondrial diseases, amyloid neuropathies, CMT, drug-induced neuropathies, genetic motor neurone diseases, inflammatory demyelinating neuropathies, inflammatory muscle diseases, and genetic and acquired inclusion body myositis. Special topics include psychological issues, cardiac issues, and pain symptomology and management.

Paris Summer School of Myology 2011
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20-28 June 2011 - Paris, France
This condensed 7-day course in myology is held in June each year and is open to students from across the world. It is taught in English and consists of an intensive series of lectures and interactive workshops. Since its inception in 1998, over 400 students from 55 countries have received specialist myology training at this unique and highly regarded event.

EPNS training course - neuromuscular disorders
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27-28 June 2011 - Moeciu, Romania
The European paediatric neurology society EPNS has been organizing training courses in paediatric neurology since 2003 specifically aiming at trainees but also at qualified paediatric neurologists who want to refresh their knowledge on certain topics. The aim is to cover most main topics in the syllabus over a three year cycle and to promote contact between individuals in the speciality in different parts of Europe.

This course on neuromuscular disorders is co-ordinated by Imelda Huges from the UK.

The program begins with plenary sessions in the morning followed by workshop sessions in the afternoon: case presentations, discussions.

Deadline for applications 25 May 2011

Deadline for bursaries 15 April 2011

Another course looking at perinatal neurology follows on from this course running on 29th-30th June 2011.

Further details for both courses can be found on the teaching course webpage.

WMS satellite teaching course
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17-18 October 2011
The aim of this course is to improve the diagnostic competence of professionals dealing with patients with neuromuscular diseases.

With a target audience of both practising and training medical specialists, the emphasis of this course will be on the clinical approach of patients who present with symptoms of weakness and the interpretation of the muscle biopsy. The course will be entirely practical and case reports will be presented to highlight key clinical concepts.

Traditionally, the diagnosis of neuromuscular diseases has been considered difficult, but in the majority of the cases, clinical examination and routine laboratory evaluations are sufficient to point towards a neuromuscular disease. What is sometimes difficult to reach is a specific diagnosis of a neuromuscular disease in particular. Nowadays, the development of new techniques of investigation of muscle and nerve biopsy material, genetic testing, muscle imaging, metabolic studies and so on, have allowed a faster and more precise diagnosis of a specific neuromuscular disease.

This course provides a context to develop these skills. A group of professionals with different competences and a long experience in the evaluation, diagnosis and treatment of neuromuscular diseases, will run the Teaching Course, with lectures and live clinical examinations of neuromuscular patients.

EVELAM - the Latin American Summer School in Myology
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8-10 December 2011 - Sao Paulo, Brazil
EVELAM, the Escuela de Verano Latino-Americana de Miologia or Latin American Summer School in Myology, is an annual short course in myology modelled on the Paris summer school that rotates through the countries of South America. Led by Andoni Urtizberea (Paris Summer School), Norma Romero (Institut de Myologie), Alberto Rosa (University of Cordoba) and Jorge Bevaquila (University of Chile), each course is arranged with the active support of local organizers in its host country and draws in 100-120 participants on average.

This year's course will take place in Sao Paulo, Brazil, from 8-10 December 2011.

The local organizer is Dr Edmar Zanoteli of the Department of Neurology, Universidade Federal de São Paulo.

TREAT-NMD training course report:
DMD care standards training in Romania
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TREAT-NMD training course: “Standards of care in the management of people with DMD”

18 March 2011, Bucharest, Romania

Report by Katelijne Senden, ENMC

In cooperation with the Pediatric Neurology Clinic at the Alexandru Obregia Clinical Hospital in Bucharest and the Romanian parent project organisation, the European Neuromuscular Centre (ENMC) organized a training course on behalf of TREAT-NMD entitled "Standards of care in the management of people with DMD" on March 18, 2011. One of the aims of TREAT-NMD is to arrange on-site training opportunities in CEE countries, and thereby give professionals and patients located in these countries the opportunity to receive information from specialists in neuromuscular disorders at a low cost. Experts travel to a Central/Eastern European country to meet with as many representatives with an interest in neuromuscular disorders as possible. This formula again has proven its effectiveness since the audience for the Bucharest course, including adult and paediatric neurologists, geneticists, representatives of patient organisations and other professionals, consisted of over 80 trainees, mainly originating from Romania.

The course in Bucharest focused on standards of care in DMD. The training consisted of lectures which were followed by a plenary discussion on “Ethical considerations in decisions on care”. The morning session focused on standards of care in DMD, respiratory management, cardiological issues, steroid treatment, bone protection and physiotherapy. In the afternoon, activities centred on the importance of working in interdisciplinary teams, new therapeutic approaches, diagnostic possibilities in Romania, genetic diagnosis and views and needs of Romanian parents, families and patients.

Proceedings of the course were distributed to all participants, together with information on various TREAT-NMD activities. A questionnaire to evaluate the appropriateness of this training course and to gain further insight in further existing training needs was distributed to participants and collected at the end of the course. 52 completed questionnaires were handed in at the end of the training, equivalent to 64% of all attendees. This feedback will provide TREAT-NMD/ENMC with a valuable tool to further adjust and extend its current training offer according to the highest possible standards. Overall, those participants who filled in the questionnaire evaluated this training opportunity very positively, highlighting the need in Romania for specialists addressing both the genetic diagnosis and the clinical management of patients with DMD. Areas where major gaps are evident are those addressing respiratory care (which lacks both necessary instrumentation and trained personnel) and neurorehabilitation.

All participants indicated their interest in cooperating on setting up additional training courses in the country, and offered support for the implementation of the standards of care and registries in DMD and other diseases such as SMA.

On March 19, 2011, Parent Project Romania organized a day for parents, patients and families, which was attended by over 70 families, caregivers and specialists. The major topics and outcomes of the training course were shared with parents and families and presentations were given on standards of care in DMD including 2 case studies, addressing the importance of working in interdisciplinary teams, physiotherapy and orthoses and reporting on new therapeutic approaches for Duchenne Muscular Dystrophy.

The Romanian Parent Project organisation was enthusiastic about the outcomes of the training and family days, and reported that the events generated much interest in the country. As stated by Isabela Tudorache, President of the organisation, “We are sure this is the beginning of a new approach and of a new vision regarding this disease in Romania”.

The DMD standards of care family guide has already been translated into Romanian and is being disseminated together with other educational materials to facilitate the implementation of best practice in the country.

Update on TRAIN-NMD: a proposed training network
for translational scientists working on NMDs
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Efficiently addressing Orphan Diseases research and technological challenges towards delivering optimized therapeutics requires a multidisciplinary and translational approach. There is currently no dedicated training program to train translational scientists in the orphan disease fields thus slowing the discovery and understanding research processes in this area.

To advance these development of new therapies a need for translational scientists has been confirmed by both Industry and academia. These translational scientists should be well versed in basic knowledge of NMDs and the development of treatments from in vitro proof of concept studies, through animal studies and setting up and conducting clinical trials and brining a treatment into the clinic. They should also be trained in intellectual property, ethical issues, regulatory issues, entrepreneurship, management and communication with patients.

For orphan diseases clinical development is often a combined effort of the private sector and academia. Thus, translational scientists need to be aware of the workings of both, so they can act as a conduit between the two to advance clinical development of treatment for NMDs.

TREAT-NMD partners are now planning to tackle this issue through implementing a world-renowned dedicated training network for translational scientists, to train the next generation researchers in the NMD field and to further advance the successful development of therapies for NMDs.

This international and high quality training will consist of individual research projects (to advance or apply knowledge to facilitate the development of treatments) complemented with relevant training sessions to supply the researchers with the knowledge and expertise required to move this field forward and to become the future leaders of the field.

The application was completed in January 2011 and we expect to hear whether or not this was successful in September 2011.

Upcoming meetings
Past newsletters
TREAT-NMD conference 2011
8th April 2011
TREAT-NMD newsletter no. 98
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