LGMD Awareness Day

Limb Girdle Muscular Dystrophy (LGMD) Awareness Day – 30 September – is a collaborative effort to raise awareness globally of the rare neuromuscular conditions known as LGMD. As part of Limb Girdle Muscular Dystrophy Awareness Day, we are sharing facts about the condition https://www.lgmd-info.org/what-is-lgmd/lgmd-facts/. Please LIKE, COMMENT and SHARE this post to help raise awareness of LGMD! We invite everyone […]

Nationwide Campaign for More Neurology Nurses: First Stop Limerick

Join the Neurological Alliance of Ireland at their online event from 10am on Monday 4th October as they launch their #PatientsDeserveBetter campaign for more specialist nurses across neurology services. Nurse specialists play a crucial role in supporting people with neurological conditions. Increasing the number of neurology nurses will ensure that people with neurological conditions have improved […]

Safety notice for specific breathing devices

We wish to let you know that Philips has issued a Field Safety Notice for specific breathing devices. The Field Safety Notice informs customers and users of the devices of potential impacts on patient health and clinical use related to this issue, as well as instructions on actions to be taken. Additionally, the notification provides details of […]

UN CRPD Advocacy Training for People with Disabilities

Disability Federation of Ireland invite you to join them for a free online training which will focus on helping people with disabilities to use the United Nations Convention on the Rights of People with Disabilities (UN CRPD) as an advocacy tool. The training is open to people with disabilities and will focus on the use […]

MDUK Seminar on Duchenne MD

MDUK Muscles Matter 2021: seminar on Duchenne muscular dystrophy (DMD) on 9 September Join Muscular Dystrophy UK on Thursday, 9 September from 1pm-3pm for their MDUK Muscles Matter 2021 online seminar on Duchenne muscular dystrophy. The session will feature a panel of speakers and will cover the latest research into Duchenne as well as a […]

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified