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Update from HSE – online registration for COVID-19 vaccine

From today, Tuesday 4 May, people aged between 50 and 59 can register for their COVID-19 vaccine online. To avoid delays when we open registrations this week, we are asking people to register on different days depending on their age:  Registration dates and age groups Tuesday, 4 May, people aged 59 should register Wednesday, 5 […]

HSE update – 23 April – COVID-19 vaccination programme

The vaccination programme continues to be rolled out nationwide, and as of 20th April 1,240,965 vaccines have been administered in Ireland. Group 3 – aged 70 and over Vaccination of people aged 70 and over continues by GPs, who are now largely vaccinating the group aged 70 to 74.  Our National Ambulance Service is also providing […]

HSE update on COVID-19 vaccination programme

The vaccination programme continues to be rolled out nationwide, and as of 13th April 1,094,964 vaccines have been administered in Ireland. While we have largely completed vaccinations for the first 2 allocation groups, we are still working to vaccinate these groups: Group 3 Vaccination of people aged 70 and over continues by GPs, who are now […]

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 […]

Sarepta Therapeutics announces treatment for DMD

Sarepta Therapeutics announces FDA (US) Approval of AMONDYS 45™ (casimersen) injection for the treatment of Duchenne muscular dystrophy (DMD) in patients amenable to skipping Exon 45 The Food and Drugs Administration (FDA) in the USA has granted accelerated approval to AMONDYS 45™ (casimersen). AMONDYS 45™ is engineered to treat patients with DMD who have genetic […]

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 […]

Update on vaccine rollout strategy

MDI welcomes the government’s decision to move up people with certain conditions on the vaccine rollout strategy. Your efforts to contact TDs and lobbying carried out by MDI and other patient groups have had an impact. For further details, click on this link https://www.gov.ie/en/publication/39038-provisional-vaccine-allocation-groups/

‘Benefits and Entitlements – free workshops for MDI members 1 March

Places are still available for MDI’s two free Zoom workshops on 1 March – Benefits and Entitlements for People with Disabilities – facilitated by Citizens Information. You can register on Eventbrite – see links in the flyer below – or by contacting your Family Support Worker or Ewa at respite@mdi.ie. Click here here for more […]

MDI urges Government to prioritise people with muscular dystrophy who are ‘very high risk / extremely medically vulnerable’ and ‘high risk’ from Covid-19 for vaccination, as well as their unpaid/informal carers

MDI has written to key Government ministers and those in opposition, appealing for the prioritisation of people with muscular dystrophy / neuromuscular conditions who are ‘very high risk / extremely medically vulnerable’ and ‘high risk’ from Covid-19 for vaccination, as well as their unpaid / informal carers. You can view our letter to Minister for […]

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