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21st April 2011
 
1st Chinese Conference on Translational Research in Duchenne Muscular Dystrophy

Networking Duchenne muscular dystrophy research and care in China

Conference report by Professor Haifang Yin, Tianjin Medical University

After six months of intensive preparation, the first ever Chinese DMD conference was successfully held from 7-9 April 2011 in Guangzhou, China, where a group of leading international neuromuscular specialists and DMD patient organizations joined Chinese healthcare professionals, patient groups and researchers to take part in the 1st Chinese Conference on Translational Research in Duchenne Muscular Dystrophy.

Around 300 people from across the country, including clinicians, healthcare professionals, researchers and patients and families, as well as medical students from Sun Yat-sen University and Tianjin Medical University, participated in a two-day scientific programme drawn up jointly by TREAT-NMD (Professor Volker Straub, Newcastle University) and the leaders of the local organising committee (Professor Cheng Zhang, Sun Yat-sen University, Guangzhou and Professor Haifang Yin, Tianjin Medical University). The scientific programme was followed by a dedicated family day led by the United Parent Projects Muscular Dystrophy (UPPMD - Pat Furlong and Elizabeth Vroom) and Chinese representatives.

Click the "more" link to view the full conference report!

 
 
 
Next assessment round for ENMC workshop
applications announced
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ENMC workshops bring together around 20 leading experts in a particular area of neuromuscular research to share knowledge, foster discussion and make progress. The deadline for applications for ENMC workshops to be conducted in the first half of 2012 is 15th September 2011.  The forms to be completed for a workshop application can be downloaded from the ENMC website, www.enmc.org .

If you have any questions regarding the application procedure, please do not hesitate to contact the ENMC office at enmc@enmc.org.

Submission deadline: 15 September 2011

 
 
 
 
Job opportunity in Paris:
EURORDIS rare disease patient registry project manager
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EURORDIS (the European Organisation for Rare Diseases) is seeking a European Project Manager in the field of Rare Disease Patient Registries.

This is a permanent full-time position based in Paris, France and attracts an annual gross salary of between 34 k€ - 38 k€, depending upon experience.

Tertiary education (sociology, science, public health) is required as well as a minimum of 3 years of work experience in the management of projects in an international environment.

English Mother Tongue or equivalent.

The deadline for applications is 30th April 2011

Download further information here

 
 
 
 
ACE-031 Program Update From Acceleron and Shire
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In an effort to keep the Duchenne muscular dystrophy community informed, Acceleron and Shire wish to provide an update about the status of the ACE-031 clinical program. During the course of clinical trials in healthy adults and in DMD boys, some participants experienced minor nosebleeds, gum bleeding, and/or small dilated blood vessels within the skin. These events all resolved fully upon discontinuation of treatment. By themselves, the minor bleeding events and dilated blood vessels were not considered to be a serious safety concern for study subjects. However, based on review of these safety data with the FDA and Health Canada, Acceleron has terminated the A031-03 DMD study and has suspended enrollment and dosing in the follow-on extension study A031-06.

Acceleron and Shire remain committed to the global DMD clinical program and the development of ACE-031. To that end, it is our intention to start new studies of ACE-031 in DMD with appropriate safety monitoring following discussions with regulatory agencies. In the coming months, we will provide updates to the DMD community as appropriate.

 
 
 
 
NMD-chip project update from the
Steering Committee meeting in Budapest
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NMD-chip is a scientific project funded by the European Union under its Seventh Framework Programme (FP7). Its aim is to design, develop and validate new sensitive high-throughput DNA microarrays ("gene chips") to diagnose patients affected by neuromuscular disorders.

NMD-chip was launched in 2008 and the project is now entering its final phase, with its official end date being 31 September 2010. At the penultimate Steering Committee meeting held in Budapest in March, project partners gathered for a progress update and an analysis of the final stage of the project and the next steps to be taken to advance cutting-edge neuromuscular diagnostics in 2012 and beyond.

 
 
 
 
TREAT-NMD 2011 conference update

Registration for the TREAT-NMD conference is open and delegates booking now can still take advantage of the 'Early-Bird Rate' until 15th May. Full details are available on the conference website - click the green "conference 2011" button below.

Registered delegates are encouraged to submit an abstract for inclusion in one of the poster sessions. The deadline for abstract submissions is 31st July.

The draft programme is now available to download from the conference website. Comprehensive information about the conference as well as the venue and Geneva itself can also be found on the site. Specially negotiated airfares have been arranged with some airlines so be sure to check this before you book your travel. Delegates can save up to 20% with Star Alliance carriers on travel to the conference.

Don't forget that to take advantage of the early bird discounted rate you need to have registered for the conference by 15th May 2011.

 
 
Upcoming meetings
 
Past newsletters
 
TREAT-NMD conference 2011
 
21st April 2011
TREAT-NMD newsletter no. 99
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