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25th February 2011
 
Monday 28th February is rare disease day and you can get involved!

February 28th will mark the fourth International Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances across the world.

On Monday, hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan “Rare but Equal”.

A multitude of events are being planned 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, Ukraine, 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 and Health Inequalities.

Please visit the dedicated website for further information, or get involved via their Facebook and Twitter pages.

If you have any questions about the day please email rarediseaseday@eurordis.org

 
 
 
GSK answers patient questions on clinical trials
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Many patients and families around the world are aware that clinical trials in neuromuscular diseases are now running and seek information on whether they can get involved.

TREAT-NMD regularly receives questions from patients and families anxious to find out which trials are happening, which clinics are involved, and which patients might be eligible.

We have therefore put these questions to the pharmaceutical companies running the trials, and will publish their responses on the TREAT-NMD website. We hope that this will help to clarify some of the questions patients and families have about clinical trials.

The first set of questions was sent to GSK, who have a program in Duchenne muscular dystrophy, and we have now published their responses online.

In the future we will be asking similar questions of the other companies involved in trials for DMD and other neuromuscular diseases.

 
 
 
 
International conference on muscle wasting
18th - 23rd September 2011, Ascona, Switzerland
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This conference will focus on the molecular mechanisms involved in muscle-wasting diseases including cachexia, sarcopenia and muscular dystrophies. Organized by Markus A. Rüegg, Biozentrum, University of Basel; David Glass, Novartis Institutes for Biomedical Research; and Denis Guttridge, Ohio State University Medical Center, this will be a highly interactive meeting with a unique focus on disease aspects in skeletal muscle.

The call for abstracts for the conference is now open, with a deadline of Friday 29th April.

 
 
 
 
Hungarian TREAT-NMD website goes live!
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TREAT-NMD's Hungarian partners at the National Institute of Environmental Health are delighted to announce the launch of a new TREAT-NMD website for Hungary, www.treat-nmd.hu.

The site includes news and events, information about TREAT-NMD, CARE-NMD and neuromuscular diseases, and a patient forum, together with details of how to sign up for the Hungarian registries for DMD/BMD and SMA, which feed into the TREAT-NMD global patient registries.

Marta, Veronika and Agnes look forward to hearing feedback from Hungarian-speaking patients and professionals about their new site!

 
 
 
 
DMD care standards training course in Romania:
registration deadline approaches
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The ENMC on behalf of TREAT-NMD is organizing its fifth on-site training course, which will be held in Bucharest, Romania on 18 March 2011.

The goal of the course is to raise awareness about Duchenne muscular dystrophy among Central and Eastern European healthcare professionals and the research community, and distribute information on the latest developments in therapy and standards of care.

Registration for this event will be closing on the 27th February. Attendance is free of charge but places are limited.

Details of how to register can be found here, together with a programme and further information about the meeting.

 
 
 
 
EUCERD's first meeting report available
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EUCERD, the European Union Committee of Experts on Rare Diseases, met for the first time on 9-10 December 2010 in Luxembourg.

EUCERD is an expert committee of the European Union charged with aiding the European Commission with the preparation and implementation of Community activities in the field of rare diseases.

Topics discussed in this first meeting included a road map for the implementation of the EU policy on rare diseases, the Europlan project, the creation of the network of experts on newborn screening for some rare disorders along with FP7 and DG research activitiesin the field of rare diseases.

The next meeting will be held on the 22-23 March 2011, and will be preceded by a workshop on centres of expertise and European collaboration between centres of expertise for rare diseases.

Further information about the committee and their activities can be found  by visiting their website.

 
 
 
 
Upcoming meetings
 
Past newsletters
 
TREAT-NMD conference 2011
 
25th February 2011
TREAT-NMD newsletter no. 95
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