10th annual conference to be hosted by Action Duchenne:
Holiday Inn, Bloomsbury, London
9 – 10 November 2012
Action Duchenne will once again be hosting the International Duchenne Conference. This year the conference is focusing on the development and delivery of the first genetic medicines that are expected to become available within the next couple of years, and Action Duchenne’s ground breaking SkipDuchenne campaign. There will be in depth presentations from academics and scientists from around the globe highlighting the progress of research to date into finding viable treatments for this currently incurable condition. The conference has an entire stream dedicated to ‘Takin’ Charge’, a programme launched by Action Duchenne aiming to help those living with Duchenne to take more control of their care requirements, living arrangements and job opportunities as they mature.
High profile speakers include representatives from Great Ormond Street Hospital, University College London, Universities of Oxford, Cambridge, Reading, and Newcastle; biotechs including, GSK, Prosensa, Sarepta (previously called AVI BioPharma); and other organisations including Care NMD and MDEX. There will be speakers from the UK, USA, France, Australia, and the Netherlands, talking about potential treatments for Duchenne including exon skipping, stem cell therapy, gene replacement, and various therapies for those living with Duchenne.
Paul Lenihan, National Director for Action Duchenne said; “This year’s conference is set to be the largest in our ten year history. We are now excitingly close to the first genetic treatment for Duchenne, but there is still much to do. We need to get these treatments into the clinic as soon as possible because our young people living with Duchenne which is a life limiting condition, don’t have time to wait. Our focus is very much on driving research and development of treatments for Duchenne and then delivering them to patients, as quickly as possible.”
For more information on Action Duchenne and Duchenne Muscular Dystrophy, and to book your place please visit: www.actionduchenne.org.
Notes to Editors
About Action Duchenne
Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy. The charity, which is led by Duchenne families, aims to promote awareness of the condition, to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition. This is achieved by working in partnership with government agencies, NHS and care organisations, other charities, academic, scientific and research groups, and biotech companies worldwide.
Action Duchenne is actively campaigning for best practice in care for Duchenne based on the publication of an international consensus document in Lancet Neurology in Jan/Feb 2010. The published article was the product of an extensive review by 84 international experts in Duchenne Muscular Dystrophy diagnosis and care, and was supported by the Centers for Disease Control (CDC) in the US. It provides an expert guide to recommendations on the multidisciplinary care that should be available to all individuals with Duchenne. Several Duchenne patient organisations including Action Duchenne and the TREAT-NMD network have helped to produce a ‘Guide for Families’, based on the original academic article, which is written in language accessible to all without a medical background.
Since 2003 Action Duchenne has provided £4m for research projects and partnerships. The charity has worked with the MDEX consortium, Department of Health, and the Medical Research Council to deliver new clinical trials for Duchenne drugs. In addition, it has been instrumental in developing projects with biotech companies both in the UK and US including key projects with Sarepta (previously known as AVI Biopharma) and Summit.
In 2005 Action Duchenne launched the DMD Patient Registry, a national database that holds gene information of people living with Duchenne that is used to speed up the recruitment of patients for clinical trials. For more information please visit: www.dmdregistry.org
In 2008 Action Duchenne launched the Include Duchenne project in partnership with Decipha. This programme addresses the learning and behaviour needs of those living with Duchenne. In 2011 Include Duchenne won the National Lottery Award for Best Education Project for Decipha. For more information please visit: www.decipha.org
Action Duchenne promotes social inclusion within the community for young men living with Duchenne through its Genius programme. Its Takin Charge project is a programme aimed at developing skills of adulthood that will be additional to GCSEs covering areas such as IT and social media, self advocacy for medical care, workplace skills, skills for independent living including developing a social life, relationships and sexual health. For more information please visit: www.actionduchenne.org/geniusproject
In 2010 the National Advocacy Council was launched to spearhead the lobby for government funding for research into Duchenne and to improve access to Standards of Care. www.actionduchenne.org/NAC
Patrons of Action Duchenne include: actress Helena Bonham-Carter, cellist Julian Lloyd-Webber, journalist & broadcaster Martin Bashir and radio broadcaster & media trainer Susan Bookbinder. In addition, Richard Goodman, one of Great Britain’s leading young athletes is an Ambassador for Action Duchenne,
For more information please visit: www.actionduchenne.org
Operations Manager, Action Duchenne
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500
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