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6th May 2011
 
Online tutorial on 'The Ethics of Children in Clinical Trials' now available

An online tutorial on 'The Ethics of Children in Clinical Trials' has been put together by staff from Policy, Ethics and Life Sciences (PEALS) at Newcastle University and TREAT-NMD.  It is aimed at professionals in all areas who would like to undertake an introduction into the ethics of children in trials.  The tutorial is interactive, web-based and freely available and those using it are able to study at their own pace.  The tutorial begins with a discussion of the ethical principles around involving children in research, then considers these issues with reference to rare disease and to Duchenne muscular dystrophy.

Simon Woods, Co-Director of PEALS, said: "we hope this tutorial will be a useful, practical tool for researchers, scientists and clinicians who would like to familiarise themselves with ethics in this area and gain an insight into how ethics doctrines can be used in real-life situations".

 
 
 
Early-bird rate for TREAT-NMD conference closes on May 15th
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The 'early-bird' registration rate for the TREAT-NMD conference in November 2011 closes shortly.

Delegates registering before the 15th May will pay the lowest registration fees available for the conference and can expect to save an average of 100 Euros over the late registration fees. Once registered, delegates are encouraged to submit an abstract for one of the two poster sessions that are scheduled for the conference. Further details about registration and the programme can be found on the conference website.

 
 
 
 
Download an interview with Dr. Annemieke Aartsma-Rus
about the current state of exon skipping in DMD
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Dr Guenter Scheuerbrandt, well known for his comprehensive and understandable "Duchenne Research Reports" for families, interviewed Dr Annemieke Aartsma-Rus in early April about the present state of exon skipping research in DMD.

The transcript of this latest interview can now be downloaded from the DMD research overview section of the website, where you can also read Annemieke's extensive article giving a comprehensive 'lay' overview of current research approaches in DMD.

 
 
 
 
AFM Telethon thanks supporters and announces
new three year partnership with French TV
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Laurence Tiennot-Herment, President of the AFM, is delighted to announce a new three-year partnership between the AFM Telethon and France Televisions. Readers of this newsletter may recall the concerns in December 2010 over the future of the French Telethon event, which raises almost 100 million Euros each year for vital neuromuscular and rare disease research. The new partnership with the French national TV network, signed on 28 April, brings an end to the uncertainty and marks the start of an exciting new chapter in the Telethon story.

Thanks to you all

The news last December that the Telethon was under threat brought an overwhelming response from all over the world. 2100 researchers publicly "bore witness" to the value of the Telethon for their research by signing an online petition; 93,000 individuals from across the world added their voice to a petition saying "No to the destruction of the Telethon", while 5000 rare disease organisations from 84 countries rallied round to support the continuation of this vital event. This massive public and professional support played a decisive role in this positive outcome with France Televisions, and Laurence Tiennot-Herment extended her warmest thanks to all those across the world who pledged their support.

Despite stormy weather and a difficult economic climate, the 2010 Telethon raised a grand total of 90,450,886 Euros. The 2011 Telethon will be the 25th in the organisation's history, and AFM have set themselves an ambitious goal: the organisation of 25,000 events across France and the mobilisation of all the Telethon generations.

The 2011 event will take place on 2-3 December 2011.

 
 
 
 
Mexican DMD organisation hosts "First UPA! Day" on 13-14 May
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Beginning on Friday 13th May and spread over two days, the First UPA! Day conference in Merida in Yucatan, Mexico will consist of medical presentations, workshops and talks on the subject of Duchenne muscular dystrophy.

The event is part of UPA's education program for medical and healthcare professionals, patients and families, and patient groups. The Friday events are primarily oriented towards the medical community, to increase knowledge about and interest in Duchenne and aiming to identify health professionals interested in becoming specialists and part of a multidisciplinary team to treat Duchenne which will be encouraged to participate in further training programs. On the Saturday, a workshop will be held to train parents and healthcare professionals on the recommendations for everyday management and care of patients with Duchenne muscular dystrophy at home.

Further details about this event can be found here.

As a member of TREAT-NMD UPA! has its own dedicated page on the TREAT-NMD website. On this page are details of the organization along with their recent activities, including a short article about 6-year-old Diego, who with help from family and friends completed his first marathon.

 


May 13

Knowing Duchenne Muscular Dystrophy
International standards of treatment
Diagnostic importance of genetic and molecular study
Research promising
UPA! as Duchenne specialist agency.
Rehabilitation, technical aids and Management Orthotist
Clinical experience in Duchenne.
Differential genetic diagnosis for different muscular dystrophies. Meeting with the specialist.
Orthopedic treatment.
Pulmonary Therapeutic Management.

May 14

Therapy and rehabilitation workshop for specialists and parents.
Orthopedic treatment.
Standards of care at home
Pulmonary Therapeutic Management.

 

 
 
 
 
Upcoming meetings
 
Past newsletters
 
TREAT-NMD conference 2011
 
6th May 2011
TREAT-NMD newsletter no. 100
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