Nemaline Myopathy Support Group

Resources

Professional and medical contacts

EUROPE

Having your child diagnosed with nemaline can be a devastating time. It is important to discuss future health and care issues. The following people can help advise you. All names below are given by families who have dealt with the people listed. Please advise me if you find these details out of date.

England

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Prof. Kate Bushby, Newcastle Muscle Centre, England (north east) (2014)
  • Arranging a personal health budget (care package). (2014)
  • Consultant Paediatric Neirologist Dr. Christian de Goede, Paediatric neuromuscular team at Lancashire Teaching Hospital NHS Foundation Trust. The team includes a neurologist, specialist neuromuscular nurse, specialist physiotherapist and occupational therapist, all supported by a clinical psycologist. England (north west)
    Dr. Goede runs a clinic twice a month at different locations in Lancashire. Source: Muscular Dystrophy Campaign Newsletter. (Dec. 2013)
  • Several people with NM see specialists at Hammersmith Hospital in London (2005)
  • Queen Square hospital, London, by a team headed by Dr Hanna (2008)
  • Prof. Francesco Muntoni, The Dubowitz Neuromuscular Centre (DNC) and the Institute of Neurology (ION) Neuromuscular Centre in London. (2014)
  • Prof. Anita Simonds. Respiratory assessment of patients with neuromuscular disorders. London
    More profile on Prof. Simonds.
    Prof. Simonds gave talks at NM Conferences in Scotland (2007), and London (2011)
  • Neuromuscular Care Advisor, Tamsin Coade is based at Royal Cornwall Hospital, Truro. England (south west)
    Tamsin supports people up to age 25, and is available Tuesday, Wed., Thurs. 01875 254 526 Or tamsin.coade@nhs.net (2008)

Germany

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • University of Munich. Kinikum. (2015)

Ireland

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Assist Ireland: This website is provided by the Citizens Information Board. It contains information on assistive technology and a directory of products available from Irish suppliers for people with disabilities and older people. (2010)
  • Enable Ireland offers many links regarding assistive technology. (2010)
  • Children's University Hospital, Temple Street.
    They have had a few cases of NM as have OLCH Crumlin. (2010)

UK

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

Wales

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Cathy White, Consultant Neurologist, Wales (2005)
































Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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