E-learning platform for healthcare professionals

TREAT-NMDs interactive e-learning platform is aimed at healthcare professionals involved in the diagnosis and treatment of people with neuromuscular conditions. You can expect to find free courses and resources in relation to: Limb Girdle Muscular Dystrophy, including perspectives of people living with the condition, muscle biopsy as a tool for diagnosis and best practice for […]

RTE features ground-breaking gene therapy for SMA Type 1 in ‘Hospital Live’

You can hear about the wonderful impact of gene therapy, Zolgensma, for babies with Spinal Muscular Atrophy (SMA) Type 1 which has recently been used for the first time in Ireland – on RTE’s Hospital Live here.  (It starts 8.47 minutes in.) The programme features parents, David Ryan and Liz McMahon, as well as Dr Declan […]

Daily living, and quality of life survey

Exploring illness, daily living, and quality of life Eoin Fenton, a fourth-year social care honours student studying in Munster Technological University (MTU) would like to invite you to complete a survey (link below). What is this survey about? This survey explores the illness experience, daily living, and quality of life of those living with Muscular Dystrophy. […]

The SAMPI project Survey

The SAMPI project is funded by the Temple Street Foundation to “Give a voice to the children and their families with Rare Diseases through Sand Play, Art, Music, Photovoice, Interviews and Survey. They are launching a Qualtrics web-based survey, and MDI are encouraging our members to participate in this survey.  For more details see below. […]

NAI Survey Impact of COVID

Neurological Alliance of Ireland (NAI) have just launched a new survey to examine the impact of COVID-19 on access to services for people with neurological conditions. Over one year on from their first COVID-19 survey, what has changed and what are your concerns and hopes for the future? The survey only takes a few minutes […]

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 […]

ENTWINE survey on informal care

ENTWINE survey on informal care Would you like to take part in an EU-wide survey on informal care? If you are a caregiver or a care recipient, you can access the anonymous survey on this link https://entwine-icohort.eu/. Find out more about the project here https://entwine-itn.eu/.

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 […]

National Carers’ Strategy Survey

Care Alliance Ireland would like to invite you to participate in a short survey on the National Carers’ Strategy. The National Carers’ Strategy was published in 2012. It describes government policy for those who care (in an unpaid capacity) for older people, children and adults with an illness or a disability. The National Carers’ Strategy contains […]

Survey Results on Adult Camp and Holiday Programme

Last month, MDI invited adult members to take part in a survey which aimed to find out members opinions on MDI’s Adult Camp and Holiday Programme (accessible and supported breaks in Ireland organised by MDI for Adult Members with Muscular Dystrophy). The survey received 104 responses between the 20th of November and 8th of December […]

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