Useful Links

MDI is an active member of organisations in Ireland and internationally who are working on a range of issues of importance to MDI including those working in the areas of neurology, genetic and rare conditions, disability, independent living, research and development of treatments. These organisations include the following:

Carmichael Centre for Voluntary Groups
Description: Carmichael Centre for Voluntary Groups is a centre for small national voluntary organisations working at the cutting edge in areas such as disability, illness, education, the arts, the environment and social care.

Central Remedial Clinic
Description: The Central Remedial Clinic (CRC) provides a range of specialisedsercices for children and adults with physical disabilities. Its facilities and services are availbale to people from all over Ireland.

Disability Federation of Ireland
Description: Supporting organisations to enable people with disabilities an advocate for the voluntary disability sector

Enable Ireland
Description: Founded in 1948, Enable Ireland provides services for 3,500 children and adults with disabilities.

Genetic and Rare Disorders Organisation
Description: National alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.

Irish Platform of Patient Organisations, Science & Industry
Description: A unique partnership of patient groups, science and industry, aiming to smooth the path in Ireland to get new medicines and therapies from basic science in laboratories to the patients who need them.

Irish Wheelchair Association
Description: The Irish Wheelchair Association (IWA) is the national organisation of people with limited mobility.

National Centre for Medical Genetics
Description: The NCMG seeks to provide a comprehensive service for all patients and families in the Republic of Ireland affected by or at risk of developing a genetic disorder.

Neurological Alliance of Ireland
Description: Umbrella organisation for groups representing the views and concerns of those affected by neurological conditions

Other Organisations we work with:

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