Welcome to the MDI website. Content and updating of information is ongoing on our website, therefore if you cannot find what you are looking for please contact us.

Muscular Dystrophy Ireland Survey on Adult Camp and Holiday Programme

We would appreciate it if you would take a few minutes to complete our survey on MDI’s Adult Camp and Holiday Programme (accessible and supported breaks in Ireland organised by MDI for Adult Members with Muscular Dystrophy). We will use the information you give us to help us plan and develop programmes in these areas […]

Apply now for Duchenne Patient Academy 2020

Apply now for Duchenne Patient Academy 2020 The Duchenne Patient Academy (World Duchenne Organization) will host a virtual training programme for patient advocates between 30 November and 6 December 2020. The majority of patient groups are members of the World Duchenne Organization and the Duchenne Patient Academy. Please note that individual patient advocates can also apply to […]

Mindful Connections Workshop – 10th November 2020

We are please to announce an new online Mindful Connections Workshop aimed at helping you to reflect on your overall wellbeing and build on your self-compassion and other skills to remain happy and motivated. The Workshop will begin on Tuesday 10th November from 12PM-1PM, and will be run through ZOOM. due to demand we have […]

MDI Virtual AGM: Reminder

A reminder that the MDI AGM takes place on Saturday 12th September at 12:30pm, via ZOOM The official notice of the AGM together with links to all the relevant materials that you will need for the AGM were published on the website on 21st August 2020 – https://www.mdi.ie/notice-of-agm-2020/ If you are planning to take part, […]

Reminder – “Shout Out” to Members

  We would like to remind you that nominations for election to MDI board of directors are now being accepted. Note: Board members can only be nominated by MDI members who have paid their annual subscription on or by the 23rd March 2020. To be able to vote for a board nominee you must also […]

HSE COVID Tracker App

The HSE COVID Tracker free app is now available for your mobile phone. It will help us to protect each other and slow the spread of coronavirus (COVID-19) in Ireland. Using the COVID Tracker app along with the existing public health measures will help us all stay safe when we meet up, socialise, work or […]

Face Coverings & Covid-19

Face coverings help prevent people who don’t know they have the virus from spreading it to others. They should be worn anywhere it’s difficult to stay 2 m apart, like shops or public transport, or when visiting anyone who is more at risk. This includes people aged over 70, or people who are medically vulnerable, […]

Covid-19 Information Updates – HPSC & HSE

As HSE information on Covid-19 is live and updated regularly, we advise you to access it directly from these sites:   HPSC website: https://www.hpsc.ie/…/coronavirus/novelcoronavirus/guidance/ HSE page with disability-specific resources: https://www.hse.ie/…/news…/covid19-updates/partner-resources

Communication of New AGM Date

Please find below, Communication of New AGM Date for Muscular Dystrophy Ireland:   Dear All We would like to advise you that Muscular Dystrophy Ireland will now hold their Annual General Meeting on Saturday 12th September 2020. The well-being of Members, Management and Staff is a primary concern for The Board of Muscular Dystrophy Ireland […]

Resources and Supports – Family Carers Ireland

Family Carers Ireland provide a range of services and supports to family carers and provide a national voice to represent fairness for carers. They are offering a number of Resources and Supports for family carers, find out more from the links below:   Counselling Free online and telephone counselling service for family carers – https://familycarers.ie/help-and-advice/online-and-phone-counselling-service/ […]

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