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NAI Survey Impact of COVID

Neurological Alliance of Ireland (NAI) have just launched a new survey to examine the impact of COVID-19 on access to services for people with neurological conditions. Over one year on from their first COVID-19 survey, what has changed and what are your concerns and hopes for the future? The survey only takes a few minutes […]

Webinar on Wheelchair Accessible Vehicles

MDI is holding a free information webinar on ZOOM for members on 28th June from 12.00 – 12.45 pm. This session will be facilitated by Richard Ryder from the Disabled Drives Association of Ireland (DDAI) and will focus on the provision of information about wheelchair accessible vehicles and businesses that provide supporting services. To register, contact […]

National Carers’ Week takes place from 7 to 13 July 2021

National Carers’ Week is taking place from 7 to 13 July 2021. You can find out more about scores of brilliant online events throughout the week by clicking here.   Aspects to the week this year include live online Question and Answer sessions with several partner organisations (which will be facilitated on the National Carers’ Week […]

Survey on Access to Health Information

  Dear MDI Member, We have been approached by IPPOSI – the Irish Platform for Patient Organisations, Science and Industry – to invite you to share your perspective on access to health information. IPPOSI hosted a Citizens’ Jury on Access to Health Information with 25 members of the public in April 2021. The findings from this jury will be […]

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

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core 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 Myositides

  • 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

  • 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

12. Other (Please Specify)

13. Unspecified