MDI: Coping with your child’s diagnosis of muscular dystrophy

Muscular Dystrophy Ireland recently made a short video with helpful information on coping with your child’s diagnosis of muscular dystrophy, coming to terms with and talking to your child about the diagnosis, and explaining how MDI is here for you. We hear from a parent, a developmental-behavioural paediatrician, a person living with muscular dystrophy and […]

Annual General Meeting 2023

Dear Member, I am writing to inform you that Muscular Dystrophy of Ireland Company Limited by Guarantee (MDI) will hold its 2023 Annual General Meeting (“AGM”) on Saturday, 27th May 2023 at 12.30 pm at the registered office of the Company at 75 Lucan Road, Chapelizod, Dublin 20, D20 DR77 and, for members using Zoom facility, […]

Call out to paid up members up to 31st March 2023

We need your help! To run a successful charity, we need member participation on our board. We simply could not succeed without you. We need you to join us and provide diverse skills that will help us deliver our mission and values. Why: our objective is to help our members, to provide information, support and services, to promote independent living […]

An update on our peer camp

Dear Members, We have long held our Peer Summer Camp in high regard. Each year we strive for a shared experience, fostering independence, social skills, confidence, and fun for everyone who attends. As a charity, the standards for services are provided to our sector from the Health Information and Quality Authority (HIQA). In recent times […]

Standards of care

Recommended standards of care bring together research and recommendations from clinical experts in the field with the aim to improve clinical care for individuals with specific conditions. Below is a list of neuromuscular conditions for which international standards of care have been developed. These publications can be used by doctors, people living with the condition, […]

The AHEAD2023 Conference is open for registration

The Biggest Conference for Students and Learners with Disabilities – Power of Disability – January 25th & 26th Online AHEAD and the Union of Students in Ireland are happy to present the Power of Disability Conference 2022, taking place January 25th and 26th. This two day event will include discussions, presentations and feedback sessions encouraging students with disabilities to be leaders on their own […]

Neurological Alliance of Ireland Pre Budget event: Will your local TDs be there?

On Tuesday 20 September the Neurological Alliance of Ireland will host a pre-budget event: providing its member organisations with the opportunity to meet with TDs and highlight ongoing advocacy campaigns. MDI is a member of the NAI. You can help to make sure your local TDs attend by using the simple tool on the NAI […]

Call out to paid up members

We need your help! To run a successful charity, we need member participation on our board. We simply could not succeed without you. We need you to join us and provide diverse skills that will help us deliver our mission and values. Why: our objective is to help our members, to provide information, support and services, to promote independent living […]

Survey on pregnancy, family planning and rare conditions

Would you like to take part in a survey on challenges and good practice related to pregnancy, family planning and rare conditions? The European Reference Networks’ (ERN) Study Group on Pregnancy and Family Planning in rare, low prevalence and complex conditions has published a survey that aims to collect evidence on the management of pregnancy […]

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