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21st September 2011
Patient focus at the TREAT-NMD International Conference, Geneva

The experience of patients and families with neuromuscular diseases forms a core part of the programme of the TREAT-NMD Conference in Geneva, with two sessions providing a patient focus on living with neuromuscular diseases.

Patient Forum

The opening session will be a patient forum faciliated by Pat Furlong (PPMD), where a panel comprised of patients and their families will discuss a range of issues including:

  • participation in/access to clinical trials
  • the level of care they receive
  • independence and access to services
  • access to potentially expensive treatments
  • the transition from walking to the loss of ambulation
  • their hopes for the future

The model of the forum is adapted from the US program "Project DOCC" - Delivery of Chronic Care - which uses the experience of family caregivers and adult patients to enhance health care practice.

Session 7: Life Quality vs Quality of Life

Chaired by Pauline McCormack (Newcastle University) and Thomas Sejersen (Karolinska Institute), this will begin with a Q&A session, and include three keynote presentations:

  • Tom Shakespeare (World Health Organisation) on the social aspects of quality of life with disability
  • Gail Geller on perceptions and interpretations of "hope" in families living with Duchenne muscular dystrophy
  • Pat Moeschen on living with muscular dystrophy

The full conference programme is available to download. Remember to register now to guarantee your place.

41st EAMDA Conference & TREAT-NMD training course report
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41st EAMDA Annual General Meeting and TREAT-NMD training course: "Best practice implementation in the management of patients with NMDs"

From the 8th -11th September in Prague, the Czech Republic Association of Muscular Dystrophy hosted the 41st Annual General Meeting of the EAMDA and, in conjunction with it, a TREAT-NMD Training Course on “Best practice implementation in the management of patients with NMDs”.

The one-day course was organised by the ENMC in cooperation with Thomas Sejersen (Karolinska University, Stockholm) and Stanislav Vohanka (Neurology Department, Brno University). It was attended by 23 neurologists mainly from the Czech Republic.


Czech conference on multidisciplinary care for SMA and other NMDs
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On 16th-18th September, the Faculty of Health and Social Studies in České Budějovice, Czech Republic, hosted a conference dedicated to the multidisciplinary approach to caring for children with neuromuscular diseases and in particular spinal muscular atrophy. The aim of the conference was to present the latest research findings and new approaches to multidisciplinary care.


Young scientists encouraged to attend 8th International Myotonic Dystrophy Consortium meeting
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The 8th international Myotonic Dystrophy Consortium Meeting (IDMC-8) will take place in Clearwater Beach, Florida, between 30th November and 3rd December.

Graduate students, postdoctoral fellows and medical fellows (classified on the IDMC-8 website as Young Scientists) are particularly encouraged to attend: based on current fundraising efforts, the organising committee hope to reimburse a significant proportion of travel and accommodation costs for Young Scientists, and multiple prizes will also be awarded for best oral and poster presentations.

The IDMC is an informal group of clinicians and research scientists with a common interest in understanding the molecular basis of myotonic dystrophy (DM), and generating effective treatment strategies. The IDMC-8 meeting provides a forum for scientific presentations and discussions, as well as promoting interaction between clinicians, scientists, patients and their families.

Upcoming meetings
Past newsletters
TREAT-NMD conference 2011
21st September 2011
TREAT-NMD newsletter - 21st September 2011
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