View this email in your browser
Newsletter June 2014

In This Issue

RARE-Bestpractices Annual Meeting Update 
Upcoming Neuromuscular Meetings
Muscular Dystrophy NSW PhD Scholarship 
ANN website inaccessible 


Update: RARE-Bestpractices project annual meeting, Rome, March 2014

RARE-Bestpractices is a European Commission funded project working to establish platforms to improve the management of rare disease patients. The project includes 15 ‘partner’ organisations spanning nine European countries. Chief Investigators from the Centre of Research Excellence in Neuromuscular Disorders (CRE-NMD) were successful in securing NHMRC and EU funding to participate in an advisory role to the RARE-Bestpractices project, providing expertise specific to neuromuscular disorders. Joshua Burns, Merryn Pearce, Hugh Dawkins, Paula Bray and Lyndal Douglas are leading four key objectives under this project. These initiatives include a gap analysis to guide improvement in clinical care, a systematic review of literature and development of best practice guidelines, and the establishment of patient registries for rare neuromuscular disorders.
In March this year, Joshua Burns and Merryn Pearce attended RARE-Bestpractices’ second annual meeting held at the National Centre for Rare Diseases in Rome, Italy. The annual meeting was an opportunity to review progress to date, and discuss objectives for the coming year. A great deal of progress has been made under the project’s eight work packages. This includes:

  • Commencing construction of a public guidelines database that will serve as a central point of access to guidelines and other literature for rare diseases
  • Commencing development of a public database of research recommendations for rare diseases
  • Creation (and piloting) of a methodology to guide the development of practice guidelines for rare diseases
  • Launch of the Rare Disease and Orphan Drugs Journal, available at

Following the meeting, Australian project members (Joshua Burns and Merryn Pearce) were invited to contribute to work package four of RARE-Bestpractices, which is focussed on establishing a database of rare disease guidelines. This will involve working with the lead team (Healthcare Improvement Scotland) to collect and appraise guidelines related to a number of neuromuscular disorders. These guidelines will be included on the public database.
Further information about the RARE-Bestpractices project and its specific work packages can be found at

ANZCNS Annual Scientific Meeting Adelaide
25-27 July 2014 (REGISTER NOW)

Keynote speakers for this year's meeting are Dr Janice Fletcher, Metabolic Physician and Prof Nigel Laing, Expert in Neuromuscular Disorders. Key sessions will focus on stroke in childhood, neurometabolic disorders, neuropsychiatry and epilepsy. There will also be meetings of the ANZCNS Board, the ANZCNS Research Special Interest Group, the ANZCNS Trainee Members, the Distance Learning Tutor Network, the ANZCNS Education and Training Committee and the ANZCNS Annual General Meeting. Social events linked to this meeting include a tour of the wineries in McLaren Vale. We hope to see you in Adelaide! 

Early Registration closes 13th June.

13th International Congress on Neuromuscular Diseases - ICNMD 2014 

5-10 July 2014 in Nice, France

The ICNMD congress is a unique opportunity to share scientific advances in peripheral neurology by those involved in the fields of improving care, understanding disease pathogenesis, and developing innovative treatments in muscle, neuromuscular junction, peripheral neuropathies and motor neuron diseases.    

The program includes plenary sessions, thematic workshop sessions, poster sessions, teaching courses and breakfast seminars. 

For more information please visit: 

Society of Neuromuscular Sciences Incorporated Annual Scientific Meeting 

11-15 August 2014, Thredbo Australia 

A variety of medical topics are presented at this conference which will appeal to Specialists, Registrars, RMO's and General Practitioners. Delegates will be able to enjoy snow sports in the morning and attend the continuing education sessions in the late afternoon. 

For more information please visit

Muscular Dystrophy NSW PhD Scholarship

DESCRIPTION: A full-time postgraduate scholarship is available for a suitably qualified candidate in a relevant discipline to undertake research studies leading to a PhD.  The Sue Connor Scholarship (for commencement in 2014) is available to a scholar who wishes to undertake a PhD degree in the field of research into neuromuscular conditions. Proposals for research may be from any relevant discipline, as long as the proposed research has a demonstrable current or future benefit to those living with neuromuscular conditions, and aligns with MDNSW’s strategic directions.

ELIGIBILITY: Candidates should have an undergraduate degree in a discipline relevant to the proposed title of the PhD degree which he/she wishes to undertake. He/she should meet citizenship or visa requirements and reside in Australia throughout the funding period. Candidates should meet all the requirements of the Administering Institution to enrol in a PhD degree. The Administering Institution will be located in NSW.

AMOUNT AWARDED: The scholarship is valued at $39,000 per annum (tax exempt, if conditions are met) and may be renewed for up to three years, subject to satisfactory progress.

APPLICATION PROCEDURE: The Application FormReferees’ Report FormProfile and CV Instructions and General Instructions for Applicants are available here.If you have a question which is not addressed on the website please send the question by email to:

CLOSING DATE: 10 July 2013

For more information please visit 

ANN website temporarily down

We would like to apologise for the ANN website currently being inaccessible. Public access has been disabled due to a recent hacking. We are working on this issue and hope to have the website back in operation as soon as possible. In the meantime, if you have any questions or require any information about our website content please email 

Copyright © 2014 Australasian Neuromuscular Network, All rights reserved.

Our mailing address is:
Murdoch Childrens Research Institute 
The Royal Children's Hospital
Flemington Road, Parkville Victoria 3052 Australia 

unsubscribe from this list    update subscription preferences