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14th January 2011
 
TREAT-NMD site update goes live!

The TREAT-NMD website has just been updated with a refreshed design and new features to make it an even more useful resource for patients, families and professionals.

We encourage all our readers to visit our new disease-specific areas, which bring together information on DMD, SMA, CMD, CMT and myotonic dystrophy. Other diseases, including FSHD and LGMD, will be added soon.

The new resources section describes some of the key ways in which the neuromuscular field is ensuring preparedness for clinical trials, while the meetings and events section provides a comprehensive overview of forthcoming events relevant to the community.

The new site is still very much a work in progress, and we need your help to ensure it is complete and up to date. You can submit site updates by visiting this page and we encourage you to get in touch with your comments and suggestions.

 
 
 
CMD consensus care guidelines available as free download
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An academic article summarizing an international consensus on best-practice care for the congenital muscular dystrophies was published in the Journal of Child Neurology in November 2010. The product of a review process by international experts in CMD diagnosis and care, including patients and parents, this document is a unique guide to expert recommendations on the care that all individuals with CMD should receive.

The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/nutrition/speech/oral care, cardiology, and palliative care.

The Journal of Child Neurology has made the full text of the document available as an open-access download to ensure that it is accessible not only to journal subscribers but also to patients and families across the world. As a next step, the advocacy group Cure CMD are also working with TREAT-NMD and the journal authors to create a "family guide" in language more accessible to those without a medical background. 

 
 
 
 
Cancellation of AFM's second call for proposals
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Letter from AFM

"The second Call for AFM grant/fellowship Proposals  in 2011 has been cancelled. We arrived at this difficult decision because France Television has not yet renewed its partnership to broadcast the 2011 AFM Telethon, the major source of funding for AFM-sponsored research programs. As such, we are not in the position to open the next call for funding, initially scheduled for March 4th, 2011. Unfortunately, this includes new proposals for research projects (including Trampoline projects), requests for new PhD student fellowships, 4th year PhD student fellowships, and new postdoctoral fellowships. However, despite these uncertainties, the AFM will maintain the scheduled 2011 Call for 2nd year financing for projects/postdoctoral fellows accepted in 2010 as well as for AFM-funded PhD students (prior to the 3rd year of studies). In these cases, the progress report/application should be submitted for the March 4th deadline and will be evaluated by the AFM Scientific Council using the same evaluation criteria as previously applied. 

The AFM, the patients and their families all deeply regret this situation and we extend our sincere apologies to all research groups who are affected by this very difficult decision. We are aware that it will significantly hamper your research efforts but unfortunately the situation is outside our control. We remain optimistic that a new agreement between AFM and France Television will allow the 25th annual Telethon to be broadcast in December 2011 as previously planned. This will allow us to provide financing for the extensive high quality research programs that you, the scientists at the source of innovative therapies for rare diseases, have come to expect from the AFM. 

 

 
 
 
 
28th February is Rare Disease Day and YOU can get involved!
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February 28th 2011 will mark the fourth International Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 countries. On that day hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan “Rare but Equal”.

Patient groups across the world are planning a multitude of events to draw attention to rare diseases and the millions of people who are affected by them. Awareness-raising activities are being planned across Europe, all the way to Russia, Georgia and Armenia, as well as in the US, Canada and as far as Australia, New Zealand, China and Japan!

This year’s focus is on RARE DISEASES & HEALTH INEQUALITIES.

As members of the neuromuscular community, you can participate by becoming a Friend of Rare Disease Day. You only have to post the logo on your website and link your website to www.rarediseaseday.org. EURORDIS would greatly appreciate your support. The slogan of the campaign is « RARE BUT EQUAL ». We encourage you to use it, together with the logo, banner and poster, which are available in the ‘Downloads’ section of the website.

Don’t forget you can also:

Join Rare Disease Day Facebook Group

Follow Rare Disease Day on Twitter

Questions? Suggestions? Drop us an email at rarediseaseday@eurordis.org

Get involved – this day is the Day to put rare diseases in the spotlight! 

 

 
 
 
 
Myology 2011: poster deadline 24th January
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The AFM 4th International Congress of Myology will take place in Lille, France, between 9th and 13th May 2011.

The deadline for online submission of posters is Monday 24th January, and full instructions are available on the Congress website.

 
 
 
 
Upcoming meetings
 
Past newsletters
 
TREAT-NMD conference 2011
 
14th January 2011
TREAT-NMD newsletter no. 92
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