Suzie-Ann Bakker
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Research Study for NMD: interactive session with UK families

Banner webinar 20 April NMDs
¡Nuevo estudio!

El impacto de las enfermedades musculares en la educación y el empleo de pacientes y familiares

Join Share4Rare in this interactive webinar for families affected by a rare neuromuscular condition living in the United Kingdom.

In this session we will explain the Share4Rare research project on neuromuscular diseases. This study collects information about quality of life/burden of the pathology and the impact of the disease on learning and job opportunities for patients and their families. The pilot will collect and analyse information on the following diseases:

  • Muscular dystrophies, for instance, Myotonic Dystrophy, Facioscapulohumeral MD (FSHD), Limb-Girdle MD (LGMD), Congenital MD (CMD)
  • Amyotrophic lateral sclerosis (ALS)
  • Peripheral neuropathies
  • Congenital myasthenias
  • Congenital myopathies

Patients and caregivers affected by one of the above diseases can participate in the study and answer our questionnaires anonymously.

During this webinar, Dr. Michela Guglieri will explain why and how we research the impact that neuromuscular diseases may have on work and education opportunities. This includes the effects on the patient as well as on the caregiver. Next to this, Share4Rare platform manager Elisa Mora de Checa will explain the platform registration process and how to participate in the study.

On Tuesday April 20th, 11 AM GMT we invite you to a virtual session, where the following topics will be addressed:

  • Research project presentation
  • Process update: how fare are we?
  • How to join Share4Rare and participate in the study

During the session, questions that may arise will be collected and discussed.

This webinar will be hosted by the World Duchenne Organization in collaboration with the John Walton Muscular Dystrophy Research Centre.

Would like to join? Please register through this form.

Sign up for Share4Rare!

Enfermedades relacionadas
Congenital muscular dystrophies
Congenital myasthenias
Congenital myopathies
Fascioescapulohumeral muscular dystrophy
Limb girdle muscular dystrophy
Myotonic dystrophy
Peripheral neuropathies
Spinal muscular atrophy