TREAT NMD The TREAT-NMD network of excellence (stands for Translational Research in Europe - Assessment and Treatment of Neuromuscular Diseases) was officially launched on 1 January 2007. It is a European initiative bringing together 21 partners from 11 countries; partners include doctors, patient organisations, researchers, and public companies working on neuromuscular diseases. The initiative aims at improving treatment and finding cures for patients affected by those diseases.

family | famille | familia | famiglia | Familie In neuromuscular diseases, there is a problem in the muscles themselves or in the nerves controlling the muscles causing muscle weakness and atrophy and leading to chronic long term disability or death. It is estimated that 200,000 people suffer from neuromuscular diseases in Europe. 'One of the current problems faced by research on neuromuscular diseases is its fragmentation,' says Fabrizia Bignami, Eurordis' Therapeutic Research Officer. 'This fragmentation makes it hard to transform bench research into applied research and to develop cutting edge therapies. The network will address the fragmentation by designing and implementing a roadmap from the progression of laboratory research to clinical research.' A cornerstone of the project is the creation of the TREAT-NMD Coordination Centre (TNCC) in Newcastle-upon-Tyne (UK), which will develop and integrate organisations and networks bringing together the top researchers, clinicians and industries working in Europe in partnership with patient groups to develop treatments. Another special feature of the initiative is the development of a clinical trials coordination centre in Germany to provide advice on how to conduct trials of the highest standard and the option of top-level training for network members.

Kate BushbyTREAT-NMD is a 10 million euros initiative funded by the European Commission after much background work by Eurordis and the AFM (French Muscular Dystrophy Association). 'Eurordis has created a favourable environment for the project and now plays an active part in it,' says Fabrizia Bignami. 'We will be in charge of the development and management of supranational biobanks.' What it means in practical terms is that the already existing EuroBioBank network of biobanks for rare diseases will support the TREAT-NMD network by assessing current standard operating procedures and implementing quality control measures from neuromuscular samples; disseminating information available on muscular material to the network and scientific community, and increasing neuromuscular biomaterial availability; and offering specialised training for the use of neuromuscular biomaterials to the partners of the TREAT-NMD network. A kick-off meeting was organised on 18 and 19 January 2007 in Paris. 'We are delighted to see the enthusiasm from all partners for this initiative,' says Professor Kate Bushby, coordinator of the project with Professor Volker Straub (from the Institute of Human Genetics at the University of Newcastle upon Tyne). 'As promising treatments are now on the agenda, there is a real will for people to work together to make them a reality sooner rather than later.'

research | la recherche | la investigación | la ricerca | investigação| ForschungAt the same time, at a meeting in Paris, the AFM, the Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) from the United States, and United Parent Projects Muscular Dystrophy (UPPMD), headquartered in the Netherlands, signed a memorandum of understanding to launch Duchenne Research Collaborative International (DRCI). In forming DRCI, the organisations made a commitment to cooperate, collaborate and communicate openly in support of projects to accelerate translational research into therapeutic options to treat Duchenne Muscular Dystrophy. 'While this is a significant step forward for the Duchenne community, we are confident that the framework we are putting into place can be widely replicated for the benefit of patients with other neuromuscular and rare conditions the world over,' said Laurence Tiennot-Herment, President of AFM. A message full of hope for European patients suffering from neuromuscular diseases.

For more information:
TREAT-NMD website
Read the press release on Duchenne Research Collaborative International

This article was previously published in the March 2007 issue of our newsletter.

Author: Jerome Parisse-Brassens
Photo credits: All photos © AFM except Pr Bushby ©

Page created: 19/08/2009
Page last updated: 23/04/2021
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