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Parent Project MD Conference

Parent Project Muscular Dystrophy Conference Registration is now open for this year’s Parent Project Muscular Dystrophy (PPMD) virtual conference. It takes place from 23 to 26 June and promises four days of information education, conversation and community. Find out more here https://www.parentprojectmd.org/get-involved/attend-events/annual-conference-2021-virtual/ Please note timings are USA Eastern Daylight Time (EDT).

Santhera Pharmaceuticals Duchenne Drug Development Update

March 24: Santhera Pharmaceuticals Duchenne Drug Development Update – Vamorolone in Duchenne muscular dystrophy Parent Project Muscular Dystrophy and Santhera Pharmaceuticals are holding a webinar on Wednesday, March 24 at 1 PM (USA Eastern Daylight Time – 5pm Irish time). Santhera will provide an update to the community about the investigational therapy vamorolone, the use of steroids to treat Duchenne muscular […]

NAI report reveals critical gaps in neurology services

The Neurological Alliance of Ireland (NAI) has recently published a report “Resourcing of Neurology Services in Ireland Five Years on: 2015-2020” based on a survey of clinicians from 12 neurology centres across Ireland. It reveals critical gaps in neurology services. MDI is a member of the NAI. For more information, follow this link. https://www.nai.ie/go/news/15-3-2021-nai-report-reveals-critical-gaps-in-neurology-services

Update from HSE on COVID-19 vaccination programme

The vaccination programme continues to be rolled out nationwide, and more than 446,474 vaccines have been administered as of the 1st March 2021. As we move into next week, vaccination of Group 3 continues, with people aged 80 and over being invited for their vaccines by GPs. When this group is complete, we’ll move on to […]

Pfizer’s Phase 3 gene therapy trial for DMD

First participant dosed in Pfizer’s Phase 3 gene therapy trial for DMD Pfizer has announced that the first participant has been dosed in the Phase 3 CIFFREO clinical trial. The CIFFREO study is testing the effectiveness and safety of the potential therapy drug PF-06939926 for the treatment of Duchenne muscular dystrophy (DMD). This is the […]

Information on vaccine roll-out and safety

On Tuesday, 23 February the Cabinet approved an update to the COVID-19 Vaccine Allocation Strategy. You can fine the updated information on the provisional vaccine allocation groups here here. As part of the vaccine campaign, the HSE has launched a new TV ad. Watch the TV ad here. The ad contains messages on vaccine roll-out and safety and […]

HSE Service Plan 2021 published

The HSE National Service Plan 2021 has been published this week after a long delay. The Plan decides how the HSE’s money will be spent in 2021. There has been an eight per cent increase in funding for Disability, that’s €100 million extra in the HSE Service Plan 2021. You can watch a short video […]

Invitation to take part in consultation on draft State Report on the UN CRPD

Disability Federation of Ireland is undertaking a consultation on the draft State Report on the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). These consultations will inform their work as a member of the Disability Participation and Consultation Network, (DPC Network). This is a group of disability organisations funded by the […]

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