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Le principal objectif de la Journée Internationale des Maladies Rares 2009 est de sensibiliser les responsables politiques et le grand public sur les maladies rares et leur incidence sur la vie des malades.Article
Article
Collectif ; Torres R ; Zenteno D ; Villarroel G ; Moscoso G ; Chateau B ; Prado F ; Mancilla P ; Astudillo P | 2009Introduction : Respiratory muscle training (RMT) enhances inspiratory muscle strength, but there is no evidence of effect on forced vital capacity. Objective : To evaluate prospectively the effects on PImax and FVC of a respiratory muscle traini[...]Reco PNDS
Collectif | La Défense : Ministère de l'Ecologie, de l'énergie, du developpement durable et de la mer | 2009Guide juridique et pratique à l'usage des maires : La mise en accessibilité de l’espace public, des services de transport et des bâtiments publics est un objectif de la Loi handicap de 2005. "Véritable outil de prise de conscience, d’incitatio[...]Article
Collectif ; Roux-Lombard P ; Tamisier R ; Arnaud C ; Monneret D ; Arnol1 N ; Baguet JP ; Levy P ; Pépin JL | 2009Background : Obesity hypoventilation syndrome (OHS) is associated with an increased cardiovascular mortality. Aim : To compare inflammatory status and endothelial function in OHS versus “uncomplicated obese” patients (UO), matched for BMI, age a[...]Article
Collectif | 2009Background : The awareness of the importance of adequate nutrition in chronic non-invasively ventilated patients has increased during the past decade. The Harris-Benedict equation (H-B) is the classical formula to assess the resting energy expen[...]Reco PNDS
A European Reference Network of Centres of Expertise (ERN) is the physical or virtual networking of knowledge and expertise of national Centres of Expertise (CoE) in more than one European country. The goal of a ERN is the improvement in the ove[...]Reco PNDS
Ce guide, édité par l'association anglaise Muscular Dystrophy Association, très didactique, explique comment un enfant atteint de dystrophie musculaire est différent des autres, en montrant qu'il n'est pas seul à être différent, que personne n'e[...]Article
Objective : We assessed the effect of exercise training and non-invasive ventilation (NIV) applied during exercise on exercise tolerance and quality of life in patients with restrictive disorders. Design : Sixteen patients (TLC 55% predicted) un[...]Article
NIV is often provided by small portable ventilators. These devices are capable of meeting high ventilatory demands and even outperforming the most complex devices used in a critical care setting. However, even though additional O2 is often neede[...]Reco PNDS
... This booklet has been prepared to give you the basic knowledge about CMT and Dejerine-Sottas disease (DS) that you’ll need in order to help you prepare for changes that may occur in your future. You’ll learn that CMT is usually quite slow in[...]Reco PNDS
This booklet has been prepared to give you the basic knowledge about FSHD that you’ll need to make your life as enjoyable and productive as possible. With this information, you or your children can be prepared for changes to come and armed to mi[...]Reco PNDS
This booklet describes what a genetic disorder is and explains how genetic testing and counseling can help people understand how disorders that may affect themselves or their children are inherited. It also gives examples of the major patterns o[...]Reco PNDS
This booklet is designed to give you a clearer understanding of the causes, symptoms, complications and treatments of DM, polymyositis (PM) and inclusion-body myositis (IBM). You’ll learn that, although these inflammatory muscle diseases can cau[...]Reco PNDS
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What treatment was there? Would my symptoms get worse? Did the disease affect more than my voluntary muscles? How could I avoid episodes of weakness? Would my children have the same disease? All those questions are addressed in this booklet fro[...]Reco PNDS
This booklet has been prepared to help you understand the causes of and treatments for mitochondrial myopathies.Reco PNDS
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Collectif ; Barañao P ; Salinas P ; Mendez M ; Prado F ; Mancilla P ; Astudillo P | 2009Introduction : Need and use of chronic invasive mechanical ventilation (CIMV) has increased, as much as options of equipment for this purpose. There are no reports of using flow generator systems with bilevel positive airway pressure (BiPAP) thr[...]Article
Eighteen years ago, a road traffic accident left me paralysed and without sensation below my neck. My brain was (and is) still working and I made the decision to enjoy my life as much as possible for as long as possible. I have now lived indepen[...]