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28th January 2011
New CARE-NMD website launched

CARE-NMD is a 3-year project to implement best-practice standards of care for Duchenne muscular dystrophy (DMD) across Europe. A key aim of the project is to make high quality information on Duchenne care available to as many patients, families and clinicians as possible.

The project has today launched a revised project website, with information available in the seven languages of the Associated Partners: Bulgarian, Czech, Danish, English, German, Hungarian and Polish. Translations of the Family Guide are complete or ongoing in all seven languages, and where complete are available to download. Over the lifetime of the project, the website will be further expanded by the project partners, with additional languages and localised information. This will cover a range of topics associated with care for DMD, including information on patient organisations, details of clinical training events, and news relating to the project and the wider Duchenne community.

The CARE-NMD team would be grateful for feedback on the new site and would be delighted to work with existing and new partners to develop further translations and localised content in the future. Please contact info@care-nmd.eu if you would like to help!

Updating and disseminating the standards of care for DMD:
ENMC workshop report
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The publication in 2010 of a major DMD care recommendations consensus document (The Diagnosis and Management of Duchenne Muscular Dystrophy, Lancet Neurology) was an important step towards the establishment of a global baseline level of care. Steps must now be taken to ensure the dissemination and implementation of these guidelines. Furthermore, it is crucial that the care recommendations are continuously updated in order to keep pace with updates in best practice so that they retain their value over time. The questions of how the care standards are best disseminated, implemented and updated, what the bottlenecks are for delivery of care recommendations, and what is the best way to overcome them were the major topics for the 181st ENMC workshop in December 2010.

Planning a meeting?
Visit our meetings and events section to avoid date clashes
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The TREAT-NMD website hosts what is now a fairly comprehensive listing of meetings and events worldwide relevant to the neuromuscular field. With both a chronological listing and a monthly calendar view, this listing is a useful resource not only for those wishing to find out details of a particular meeting but also for meeting planning, helping to avoid date clashes between important meetings.

We need your help to ensure this listing is as comprehensive as possible. You can submit an event to the site by filling in our online form, and we do encourage everyone involved in planning a relevant event to mark its place in our calendar as soon as you have fixed your dates.

Awakening Australia to rare diseases: national symposium
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On the 18th-20th of April 2011, a symposium entitled Awakening Australia to Rare Diseases: Global perspectives on establishing a coordinated approach to a national plan will take place in Fremantle, Western Australia.

This symposium provides a unique opportunity for all stakeholders to shape the future direction of strategic planning for rare diseases in Australia. It will bring together international experts on rare diseases and stakeholders at a national level to work towards a rare disease strategy for Australia.

National plans for rare diseases have already been developed in the USA and Europe. These plans will be used as a framework for the symposium. National stakeholders will include health, disability and social service providers, patient support organisations, patient advocates, researchers, biotechnology and pharmaceutical industry representatives and government policy makers.

Optimal Role of Patient Organisations in Drug Development
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Kick-off meeting 24 March 2011

The position of patients has changed from ‘sufferers’ and users of care to partners in care, research and drug development. Over the last decade patient organisations have not only played a role in lobbying but also shown they are willing to shoulder responsibility and contribute towards advancing treatments and a cure. 

Patient organisations have set up patient registries, biobanks and databases with patient-registered outcomes. They have advised on standards of care, trial design and outcome measures. Industry could benefit from collaboration with patient organisations at an early stage in drug development.

This kick-off meeting begins a discussion on how partnership with patient organisations can contribute to more efficient drug development. With over 200 people from industry, academia, policy makers and of course patient organisations expected to attend, early registration for this meeting is strongly recommended via the dedicated website.

Upcoming meetings
Past newsletters
TREAT-NMD conference 2011
28th January 2011
TREAT-NMD newsletter no. 93
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