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Data Protection

By becoming a member of MDI, you acknowledge that we will need to process your personal data. Muscular Dystrophy Ireland, as the Data Controller, collects details provided by you for the following purposes:

  • Carrying out our obligations arising from any contracts entered into between you and us and to provideyou with the membership services outlined below:
    • Family Support Programme
    • Youth Service Programme
    • Personal Assistant Service
    • Counselling and Bereavement Services
    • Transport and Equipment Loans
    • National Office Facilities
    • Providing you with information on:
      • Activities and events carried out by MDI
      • Developments of relevance to people with neuromuscular conditions
      • Opportunities for members to tell MDI about issues they are experiencing
      • Fundraising activities carried out by MDI and the muscular dystrophy community
      • Opportunities to participate in research of relevance to neuromuscular conditions.

Lawful Basis

All information held concerning you as an individual for the aforementioned purposes will be held and processed by MDI strictly in accordance with the General Data Protection Regulation and Data Protection Act 2018. Such data will be processed by the organisation to administer our relationship with you as a valued member and to provide you with information about MDI activities, services, events and news. Your data will be retained for as long as you are a member and in line with MDI’s correlating legal obligations and Data Retention Schedule.

MDI’s lawful basis under Article 6 GDPR for holding and processing information concerning you is the performance of a contract.

Insofar as the personal data concerned constitute special category data as defined under Article 9 GDPR, MDI, as a not-for-profit body, relies on Article 9(d) as our lawful basis for such processing.

Your rights

Under data protection legislation you have several rights bestowed onto you. You may at any time exercise your right of access, restriction, rectification, erasure, portability, objection and to withdraw your consent (insofar as the lawful basis for processing your data is consent). To exercise your rights, please contact us on mdiinfo@mdi.ie. For further information regarding MDI’s processing of your personal data, please refer to our Privacy Policy, https://www.mdi.ie/wp-content/uploads/2020/10/MDI-Privacy-Policy-FINAL-121020.pdf.

Retention

Your data will be retained for as long as you are a member and in line with MDI’s Data Retention Schedule. We may have other legal obligations to retain that data for an extended period of time.

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