Patient Registries - Conference Question & Answer Session

The TREAT-NMD / NIH conference held in Brussels last year enabled participants to submit questions prior to the start of the conference for panels of experts to deliberate over and respond to during the conference itself. Due to time constraints it was not possible to answer all questions addressed to the patient registries during the conference and so a Q&A document has been drafted by discussants of the registry session to provide answers to all questions submitted.

The first question is included in the expanded version of this newsletter. If you would like to see the whole document please click the "more" link below.
 

Focus on UPA! Latin/Ibero-American Network

TREAT-NMD has close working relationships with patient groups across the world and in this newsletter, in the first of a series of "focus on" articles, we are featuring the work of UPA!, a Latin and Ibero-American patient advocacy group.

In 2007, Leslie Guzman established UPA! cura Duchenne with the purpose of integrating under one emblem and name the diverse efforts of leading Latin and Ibero-American organizations focused on treatment, therapies, and a cure for Duchenne and other neuromuscular disorders.

UPA!'s main objective is to give children and young people with Duchenne/Becker, along with other people affected by neuromuscular disorders, the opportunity to live a normal life, and to work towards treatments for the current generation of children and young people suffering from neuromuscular diseases. UPA! is dedicated to improving the quality of treatment for patients by encouraging Ibero-American associations with common goals to participate together in global efforts, seeking unity and collaboration between associations, integrating the region, and gathering knowledge and resources in an attempt to heighten the understanding and consciousness of society and government regarding neuromuscular disorders.
 

Patients' and Patient Organisations' Involvement in TREAT-NMD Workshop - Postponed

Due to the unforeseen travel disruption caused by the Icelandic volcano eruption, the organising committee of the Patient Voice Workshop, Patients’ and Patient Organisations’ Involvement in TREAT-NMD, scheduled to take place in Musholm Bugt Feriecenter, Denmark from 23 - 25 of April 2010, decided that it was necessary to cancel the workshop.

Understandably, it was a difficult decision and the organizing committee would like to thank the meeting participants for their constructive input, which enabled them to make the final decision.

Fortunately, the organizing committee was immediately able to offer a new date and venue for a re-scheduled workshop. We are pleased to announce that the workshop, with a similar format to the one previously planned, will take place 15-16 September 2010, immediately prior to the EAMDA meeting, in Milan, Italy. Details of this and other plans will be forthcoming soon and your input is welcomed.

MyoGrad muscle science summer school in Berlin 14-18 Jun 2010

In a new initiative linked to the longstanding summer school of myology held every year by the Institut de Myologie in Paris, MyoGrad now invites young scientists and physicians to Berlin for a related course in muscle science.

The Summer School for Myology Paris-Berlin spans topics ranging from basic muscle science to clinical myology. Two teaching modules, one in Berlin and one in Paris, comprise more than 60 lectures held by world-leading scientists and clinicians who can provide expert knowledge on this highly specialized subject.

The Muscle Science Summer School in Berlin will cover the whole field of basic muscle research, with lectures on muscle contraction, muscle development, muscle metabolism, signaling pathways and novel experimental treatment strategies.

The course will take place from 14-18 Jun 2010 and the deadline for applications is 15 May 2010.