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Queen Square Centre for Neuromuscular Diseases

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Patient and Public Engagement

The Centre has an active programme of patient and public engagement.

We undertake a range of events and activities with the following goals:

  • Supporting and educating patients and their families to understand and manage neuromuscular diseases
  • Providing patients and families with information about, and access to, research trials and experimental treatments
  • Informing the general public about neuromuscular diseases

Mitochondrial Disease Patient Engagement day 2018

The mitochondrial patient engagement day held on 13th Oct 2018 included chances for patients to meet and chat with research and clinical teams.  The latest updates on research and clinical trials were provided along with group sessions on mood / ocular problems / diabetes management / exercise and fatigue by doctors, nurses and physiotherapists from the mitochondrial disease specialist service. http://mitochondrialdisease.nhs.uk/media/london_patient_engagement_day_13102018.pdf

MDUK / UK Neuromuscular Translational Research Conference Patient day 2018 (Cambridge)

This fantastic patient day held in Cambridge in conjuction with the MRC CNMD Neuromuscular Translational Research Conference included breakout rooms with full programmes for each of Limb Girdle Muscular Dystrophy, FSHD, Myotonic Dystrophy, Mitochondrial Disease and Duchenne Muscular Dystrophy.  Specialist clinicians, OTs and physiotherapists delivered the latest updates and advice on: New treatments / prevention / activity and excercise / condition management / development of drugs / gene therapies and equipment.  MDUK_Patient_day_2018_programme

Charcot Marie Tooth patient day 2017

On 30 Sept 2017 we were pleased to present a CMT patient information day in collaboration with the CMT UK patients' association cmt.org.uk.

A number of presentations varying from general information to CMT management and CMT therapies were given by members of the MRC Centre (Prof M Reailly, DR M Laura, dr G Ramdharry. The programme also included a talk given by Catherine West, MP on employment and issues for people with disabilities. The event was well attended by more than 100 delegates and feedback was excellent.

MDUK / UK Neuromuscular Translational Research Conference Patient day 2017 (London)

For 2017, focus on this extremely well-received patient day was on patients, families and individuals affected by / supporting those with facioscapulohumeral muscular dystrophy (FSHD), limb girdle muscular dystrophy, Duchenne muscular dystrophy, congenital muscular dystrophy and spinal muscular atrophy (SMA)   link to MDUK web page

Kennedy's disease patient day 2017 (London)

MRC CNMD was delighted to participate in the organisation of the first Kennedy's disease patient day. 140 patients, carers and healthcare professionals participated in this day-long event where the UCL clinical and research teams presented updates on the advancements in this condition.   link to Kennedy's disease website

Archive

Young person's open day

Charcot-Marie Tooth Disease and associated neuropathies

Channelopathies

Mitochondrial disease

Inclusion body myositis

Myotonic dystrophy

No current information.

McArdle disease