Welcome to the latest TREAT-NMD newsletter. This week's edition features reports on a TREAT-NMD training course and the Czech patient registry for DMD, information about tomorrow's international Rare Disease Day, and news about an honour received by Guenter Scheuerbrandt, author of the renowned Duchenne Research Reports, for services to DMD.
As always, we hope you enjoy the newsletter and look forward to hearing your comments - write to info@treat-nmd.eu with anything you'd like to say. Feel free to forward this message to anybody you think might find it of interest, or invite them to sign up to receive the newsletter by visiting our website. Back-issues of this newsletter can be found on our website at http://www.treat-nmd.eu/patients/news/ezine-archive/
Best wishes,
Katie, Volker, Hanns, Steve, Emma, Rachel and Sam: the Newcastle TREAT-NMD team
26-27 Mar 2009 UK Neuromuscular Translational Research Conference
01-03 Jun 2009 Update in Neuromuscular Disorders course in London
04-06 Jun 2009 TREAT-NMD workshop: clinical trial design in neuromuscular diseases
09-11 Jul 2009 "Therapeutic Targets in CMD", Emory University, Atlanta, Georgia
09-12 Sep 2009 IDMC-7 International Myotonic Dystrophy Consortium
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Successful first TREAT-NMD Standards of Care training courseTREAT-NMD, in cooperation with the National Institute of Environmental Health in Budapest, Hungary, organised a training course on Standards of Care for Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD). This course took place from February 4-5, 2009 in Budapest, immediately following the TREAT-NMD Governing Board meeting.  MORE > |
National seminar on Czech patient registry informs doctors about registries initiativeThe Czech Parent Project for Duchenne muscular dystrophy together with the Slovak Muscular Dystrophy Association held a national meeting for doctors and patients in Prague on 19 February 09. The aim of this meeting was to inform the community about the Czech and Slovak patient registry for Duchenne and Becker muscular dystrophy and to enlist the support of doctors across the Czech Republic and Slovakia in registering patients in the system.  MORE > |
Guenter Scheuerbrandt receives German Order of Merit for services to DuchenneGuenter Scheuerbrandt, whose Duchenne Research Reports are known the world over for the accessible and comprehensive overview they provide of current approaches to research and treatment of DMD, was awarded the Order of Merit of the Federal Republic of Germany at a special ceremony on 5 February in Hinterzarten in the Black Forest. The Order of Merit was instituted in 1951 and is the highest tribute the Federal Republic of Germany can pay to individuals for services to the nation.  MORE > |
Rare Disease Day 2009: February 28!All neuromuscular diseases are classified as "rare diseases". Awareness-raising events for rare diseases as a whole, initiated by bodies such as TREAT-NMD partner EURORDIS, the European Organisation for Rare Diseases, help to influence public policy towards healthcare for all rare diseases.  MORE > |
