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 […]

Raise A Toastie to Raise Awareness on Rare Disease Day

Raise A Toastie to Raise Awareness for those living with a rare disease in Ireland. Join RDI and help make the voices of people living with rare diseases heard. Getting involved couldn’t be easier – simply create a delicious toasted-sandwich in the comfort of your own home, with your family, or host a virtual event […]

Dept of Social Protection seeks customer feedback

Department of Social Protection seeks customer feedback The Department of Social Protection is conducting research amongst customers to gather feedback on some of the schemes it delivers, including Disability Allowance. The aim is to: have a 30-40 minute virtual discussion with participants ask questions around services the department offers obtain feedback on some of the […]

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/

Picturing Communication

Would you like to take part in a Trinity College Dublin Research project which aims to learn more about how people who have communication impairments / experience communication difficulties think about communication? See below for more details.    

Getting Ireland’s Adults Covid-Vaccination ready – a public lecture from the Irish Gerontological Society on Wed 17 February from 3.00 – 4.15pm. For more information, follow the link here.

Musical Bingo

MDI presents Musical Bingo via Zoom for young members (under 18’s). Friday 14th May at 6pm.  Register by Friday 7th May by contacting your local Support Worker or by calling Sinead on: 086 6066104.

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