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Update on AstraZeneca vaccine and vaccination programme

All vaccination appointments on 13 April cancelled As you may be aware, the HSE announced that all AstraZeneca COVID-19 vaccination appointments planned for today, Tuesday, 13 April have been cancelled. If you had an appointment to get the AstraZeneca COVID-19 vaccine today, you will be contacted to rearrange your appointment. The HSE is now assessing […]

Self Care Course for Carers

MDI INTRODUCTION TO SELF CARE AND SELF COMPASSION 8 session course for Carers & Parents. Beginning Friday 30th April and running once a month from April to December From 6:30pm-8pm on Zoom To register for this course, contact your local family support worker or Ewa at respite@mdi.ie/0866066103 by Friday the 23rd of April. For more […]

Self Care Course for Members

MDI INTRODUCTION TO SELF CARE AND SELF COMPASSION 8 week course for members with muscular dystrophy. Beginning Wednesday 28th of April and running for 8 weeks from 11:30am-1:30pm on Zoom To register for this course, contact your local family support worker or Ewa at respite@mdi.ie / 0866066103 by Friday the 23rd of April. For more […]

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).

DFI Housing Survey

DFI Survey on Housing for People with Disabilities in Galway, Mayo and Roscommon All Local Authorities are responsible for reviewing and renewing their Strategic Plans for Housing People with Disabilities. This process has begun in all Local Authority areas. The Disability Federation of Ireland are seeking feedback from people with disabilities and / or their […]

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