Overview lay reports

276ENMC recommendations on optimal diagnostic pathway and management strategy for patients with rhabdomyolysis worldwide.15 March 2024
275Seronegative MG: An update paradigm for diagnosis and management9 February 2024
274ENMC recommendations for optimizing bone strength in neuromuscular disorders19 January 2024
273Clinico-Sero-Morphological Classification of the Antisynthetase Syndrome (ASyS) – Associated Myositis27 October 2023
271Third ENMC meeting on SBMA: Towards a unifying effort to fight Kennedy’s Disease20 October 2023
272Inclusion Body Myositis: 10 years of progress – revision of the ‘ENMC 2013 diagnostic criteria for IBM’ and trial readiness16 June 2023
270Consensus for SMN2 genetic analysis in SMA patients10 March 2023
269Clinical trials in DMD: Ten years on, what have we learned? How can we optimize future trial design?9 December 2022
268Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials30 September 2022
255Muscle Imaging in idiopathic inflammatory myopathies virtual meetings, first (15-16 January 2021) second (22 January 2021) third -hybrid- (9 – 10 September 2022)9 September 2022
262Standards of care for the Dysferlinopathies4 July 2022
253Skeletal muscle laminopathies – natural history and clinical trial readiness, first (30-31 October 2020), second (19-20 February 2021), third (10 December 2021) and fourth meeting (24-26 June 2022)30 June 2022
261Management of safety issues arising follosing AAV gene therapy, first (19 March 2021), second (17-19 June 2022)19 June 2022
257The 3rd ENMC workshop on Dystroglycan and the Dystroglycanopathies10 June 2022
263Focus on female carriers of dystrophinopathy: refining recommendations for prevention, diagnosis, surveillance and treatment. Virtual meetings: first (25 June 2021), second (26 November 2021), third -hybrid- (13-15 May 2022)25 May 2022
267Psychological Interventions for improving quality of life in slowly progressive neuromuscular disorders20 May 2022
265Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials22 April 2022
258Genetic Epidemiology and Clinical Trial Readiness in Encephalomyopathy of Leigh Syndrome Spectrum, virtual meetings; first (16 October 2020) second (4 December 2020) third (9 July 2021) fourth -hybrid- meeting (25 – 27 March 2022)9 April 2022
266Remote delivery of clinical care and validation of remote clinical outcomes in neuromuscular disorders: a response to COVID-19 and proactive planning for the future1 April 2022
260Congenital Myasthenic Syndromes11 March 2022
254Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients28 January 2022
256Myositis specific and associated autoantibodies (MSA-ab)24 November 2021
264Multi-system involvement in Spinal Muscular Atrophy19 November 2021
259Anaesthesia and neuromuscular disorders, first (11 December 2021), second (28-29 May 2021)28 May 2021
252Developing best practice guidelines for management of mouthpiece ventilation in Neuromuscular Disorders23 March 2020
251Polyglucosan storage myopathies13 December 2019
249The role of brain dystrophin in muscular dystrophy; Implications for clinical care and translational research29 November 2019
248Myotonic dystrophies, molecular approaches for clinical purposes. Framing a European molecular research network11 October 2019
247Muscle Magnetic Imaging: Implementing muscle MRI as a diagnostic tool for rare genetic myopathy cohorts20 September 2019
250Clinical trial readiness in nemaline myopathy6 September 2019
246Protein Aggregate Myopathies (PAM)24 May 2019
244Newborn screening in Spinal Muscular Atrophy10 May 2019
243Developing guidelines for management of reproductive options for families with maternally inherited mtDNA disease22 March 20192019
242Diagnosis and Management of Juvenile Myasthenia Gravis1 March 20192019
241Towards a European Unifying lab for Kennedy’s disease15 February 20192019
240The involvement of skeletal muscle stem cells in the pathology of muscular dystrophies25 January 20192019
239Clinicopathological Classification of Dermatomyositis14 December 20182018
245Euro-NMD Pathology7 December 20182018
238Updating management recommendations of cardiac dystrophinopathy30 November 20182018
237GNE myopathy (GNEM)14 September 20182018
236Bone Protective Therapy in Duchenne MD1 June 20182018
235The position of neuromuscular patients in Shared-Decision-Making (SDM)19 January 20182018
234Chaperone Dysfunction in muscle disease8 December 20172017
233Clinical trial readiness for Calpainopathies15 September 20172017
232Recommendations for treatment of Mitochondrial DNA maintenance disorders16 June 20172017
231International standard for CIDP registry and biobank12 May 20172017
229Limb Girdle Muscular Dystrophies, Nomenclature and reformed Classification17 March 20172017
228Airway clearance techniques in Neuromuscular Disorders3 March 20172017
230Improving future assessment and research in IgM anti-MAG peripheral neuropathy; a consensus collaborative effort24 February 20172017
227Finalizing a plan to guarantee quality in translational research for Neuromuscular diseases10 February 20172017
226Towards validated and qualified biomarkers for therapy development for Duchenne Muscular Dystrophy30 January 20172017
225A global FSHD registry framework18 November 20162016
224Clinicopathological classification of Immune-mediated necrotizing myopathies14 October 20162016
223AAV Microdystrophin gene therapy for DMD16 September 20162016
222Myotonic Dystrophy – Developing a European Consortium for Care and Therapy1 July 20162016
221Foot surgery in Charcot-Marie-Tooth disease10 June 20162016
220The 2nd ENMC workshop on Dystroglycan and the Dystroglycanopathies27 May 20162016
219Titinopathies – International database of TTN mutations and phenotypes29 April 20162016
218Revisiting the consensus statement for standards of care in SMA19 February 20162016
217RYR-1 related myopathies29 January 20162016
216Clinical trial readiness for FKRP related muscular dystrophies15 January 20162016
215VCP-related multi-system proteinopathy27 November 20152015
214Establishing an international consortium for gene discovery and clinical research for Congenital Muscle Diseases16 October 20152015
213Outcome measures and clinical trial readiness in Idiopathic Inflammatory Myopathies (IIM)18 September 20152015
212Animal models in CMD29 May 20152015
211Development of diagnostic criteria and management strategies for McArdle Disease and related rare glyco(geno)lytic disorders to improve standards of care17 April 20152015
210Towards a European consortium for research and patient clinical management in Spinal and Bulbar Muscular Atrophy (SBMA)27 March 20152015
209SMA outcomes and clinical trial readiness7 November 20142014
208Formation of a European network to develop a European data sharing model and treatment guidelines for Pompe disease6 October 20142014
207Chronic respiratory insufficiency in Myotonic Dystrophies: management and implications for research21 July 20142014
206Adults with DMD23 May 20142014
205Pathology Diagnosis of Idiopathic Inflammatory Myopathies1 April 20142014
204Biomarkers in DMD13 February 20142014
203Respiratory Pathophysiology in Congenital Onset Neuromuscular Disease: Implications for Pro-active Care and Clinical Research19 December 20132013
202Clinical Characteristics, Pathomechanisms and Trial Design for Calpainopathy (LGMD2A)21 November 20132013
201Autophagy in Muscular Dystrophies: Translational approach8 November 20132013
200European Reference Networks (ERN) – recommendations and criteria in the Neuromuscular field18 October 20132013
199FHL1 related myopathies: towards an FHL1 related myopathy consortium6 June 20132013
198Centronuclear Myopathies31 May 20132013
197Neuromuscular disorders of mitochondrial fusion and fission – Molecular mechanisms and therapeutic strategies26 April 20132013
196Outcome Measures in inflammatory peripheral neuropathies (PeriNoms)1 February 20132013
195Newborn screening for DMD12 December 20122012
194Towards clinical applications of antisense-mediated exon skipping for DMD10 December 20122012
193Pathology Diagnosis of Idiopathic Inflammatory Myopathies2 December 20122012
192ENMC Strategic workshop, shaping a stronger future18 June 20122012
191Recent advances in OPMD research11 June 20122012
190SMARD type 113 May 20122012
189Complex I Deficiency22 April 20122012
188Inclusion Body Myositis5 December 20112011
187Dystroglycan and Dystroglycanopathies17 November 20112011
186Congenital Myasthenic Syndromes27 June 20112011
185Stem/Precursor cells8 June 20112011
184Pain and Fatigue in NMD, Prevalence and management23 May 20112011
183Pre-clinical studies in animal models of Charcot-Marie-Tooth10 May 20112011
182RYR1 related myopathies18 April 20112011
181Ongoing updating and dissemination of standards of care for DMD13 December 20102010
180Myotonic Dystrophy type 2 (DM2)6 December 20102010
179Pregnancy in women with NMD8 November 20102010
178ALS4 October 20102010
177Pompe disease12 September 20102010
176Diagnosis and treatment of Co enzyme Q10 deficiency12 July 20102010
175Mitochondrial protein synthesis in health and disease28 June 20102010
174Applying Pre-implantation Genetic Diagnosis to mtDNA Diseases22 March 20102010
173Congenital Muscular Dystrophy (CMD) Outcome measures21 March 20102010
172Dysferlinopathy31 January 20102010
171Standards of care and the management of FSHD patients9 January 20102010
170Bone protection for DMD patients taking corticosteroids30 November 20092009
169Rare Structural Congenital Myopathies9 November 20092009
168Outcome Measures and Clinical trials in CHARCOT-MARIE-TOOTH DISEASE20 September 20092009
167X-linked myopathy with excessive autophagy (XMEA)22 June 20092009
166Collagen VI related myopathies25 May 20092009
165Distal Myopathies10 February 20092009
164Centro Nuclear Myopathy16 January 20092009
163Mitochondrial DNA Disorders12 December 20082008
162Disorders of muscle lipid metabolism in adults30 November 20082008
0Guidelines for DMD Genetic testing16 November 20082008
0MRI in muscle diseases19 October 20082008
161Nemaline Myopathy and related disorders29 September 20082008
160Exercise training in patients with muscle diseases23 June 20082008
1594th Annual Plenary meeting EUMITOCOMBAT27 March 20082008
158XIIth International workshop on Congenital Muscular Dystrophy11 February 20082008
157Patient registries of rare, inherited muscular disorders28 January 20082008
156Desmin and Protein Aggregate Myopathies22 November 20072007
155Polymerase gamma and disorders of mitochondrial DNA synthesis2 October 20072007
154TREAT-NMD workshop on Outcome Measures for Experimental Studies in DMD2 July 20072007
1533rd Annual Plenary Meeting EUMITOCOMBAT27 June 20072007
152European Spinal Muscular Atrophy Randomized Clinical Trial II (EUROSMART II)20 June 20072007
151International Inflammatory Neuropathy Consortium19 April 20072007
150Core Myopathies2 April 20072007
149Planning Phase I/II Clinical trials Using Systemically Delivered AON in DMD28 March 20072007
148European Amyotrophic lateral sclerosis (EURALS)9 February 20072007
147Guideline on processing and evaluation of Sural Nerve Biopsies24 December 20062006
146Recent advances in Fibrodysplasia Ossificans Progressiva (FOP)7 November 20062006
145Planning for an international trial of steroid dosage regimes in DMD6 November 20062006
144Outcome Measures in McArdle Disease16 October 20062006
1432nd Annual Plenary Meeting EUMITOCOMBA21 May 20062006
142Guidelines on Preclinical studies in ALS24 April 20062006
141EURO-laminopathies Kick-off meeting10 March 20062006
140140th ENMC International Workshop: DM2 and other myotonic dystrophies20 January 20062006
139EUMITOCOMBAT International Workshop – 1st Plenary Meeting2 June 20052005
138Nemaline Myopathy20 May 20052005
137Pompe Disease/GSDII22 April 20052005
136Charcot-Marie-Tooth disease Type 1A8 April 20052005
135Nutrition in ALS8 March 20052005
134Outcome Measures and Treatment of Spinal Muscular Atrophy11 February 20052005
133Congenital Muscular Dystrophy (CMD)21 January 20052005
132Planning steroid dosage trials in DMD3 January 20052005
131The Selection of Outcome Measures for Peripheral Neuropathy Clinical Trials10 December 20042004
130Kick-off meeting EUMITOCOMBAT12 November 20042004
129Randomised trials of treatment for chronic inflammatory demyelinating polyradiculoneuropathy and multifocal motor neuropathy27 October 20042004
128Antisense Oligonucleotides in Duchenne Muscular Dystrophy22 October 20042004
127Implementation of European Registry of ALS8 October 20042004
126Congenital Myasthenic Syndromes24 September 20042004
125Neuromuscular disorders in gypsies23 April 20042004
124Treatment of Duchenne Muscular Dystrophy2 April 20042004
123Management and therapy of myotonic dystrophy (II)6 February 20042004
122Inducing muscle hypertrophy as a therapeutic strategy for muscular dystrophies28 November 20032003
121DESMIN and Protein Aggregate MyopathiesDESMIN and Protein Aggregate Myopathies7 November 20032003
120Clinical Trials of Minocycline in Amyotrophic Lateral Sclerosis (ALS)24 October 20032003
119Trial design in adult idiopathic inflammatory myopathies, with the exception of inclusion body myositis10 October 20032003
118Advances in Myotubular Myopathy26 September 20032003
117Ventilatory Support in Congenital Neuromuscular Disorders: Congenital Myopathies, Congenital Muscular Dystrophies, Congenital Myotonic Dystrophy and SMA (II)4 April 20032003
116Treatment of mitochondrial disease14 March 20032003
115DM2/PROMM and other myotonic dystrophies14 February 20032003
114Congenital Muscular Dystrophy (CMD)17 January 20032003
113EUMITOCOMBAT14 December 20022002
112Bethlem Myopathy and other diseases related to collagen type VI8 November 20022002
111Multi-minicore Disease8 November 20022002
110Congenital non-progressive Ocular Neuromuscular Disorders25 October 20022002
109Nemaline Myopathy11 October 20022002
1083rd Workshop of the MYOCLUSTER project: EUROMEN13 September 20022002
107The management of cardiac complications in muscular dystrophy and myotonic dystrophy7 June 20022002
106Non-Invasive positive Pressure Ventilation (NIPPV) in Amyotrophic Lateral Sclerosis (ALS)3 May 20022002
105Limb-girdle muscular dystrophy – exploring the pathophysiology of the non-sarcoglycan types of limb-girdle muscular dystrophy12 April 20022002
104Distal myopathies8 March 20022002
103Designing rational therapy of SMA based on understanding of its pathophysiology18 January 20022002
102Advances in Schwartz-Jampel syndromes14 December 20012001
101Therapeutic possibilities in Duchenne dystrophy30 November 20012001
100Bethlem Myopathy and other diseases related to collagen Type VI23 November 20012001
99Myotonic dystrophy: present management, future therapy9 November 20012001
98Congenital Muscular Dystrophy (CMD)28 October 20012001
972nd Workshop of the MYO CLUSTER project: EUROMEN28 September 20012001
96DESMIN – Protein Surplus Myopathies14 September 20012001
95Cognitive Impairment in Neuromuscular Disorders13 July 20012001
94Basic methodologies for clinical trials in myopathies11 May 20012001
93Non 5q-spinal muscular atrophy (SMA)6 April 20012001
92Therapy for the periodic paralyses (2)23 March 20012001
91NMD in Gypsies9 March 20012001
90Spinal Muscular Atrophy9 February 20012001
89Central Core Disease (CCD)9 January 20012001