Nemaline Myopathy Support Group

Research

Dr. Alan Beggs (USA-MA-Boston)

Information for Patients and Families Boston Children's Hospital. We are a group of scientists and doctors studying the genes that may be involved in the cause of muscular disorders.

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Prof. Nigel G. Laing (Australia)

Prof. Nigel G. Laing (Perth) is co-convener, along with Dr. Carina Wallgren-Pettersson(Finland) of the ENMC International Consortium on Nemaline Myopathy.

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Prof. Kathryn North (Australia)

Professor Kathryn North - Head, Institute for Neuroscience and Muscle Research Neuromuscular disorders constitute one of the major causes of ongoing disability in childhood.

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Dr. Carina Wallgren-Pettersson MD. (Finland)

Carina Wallgren-Pettersson, M.D., Co-Convenor of the ENMC International Consortium on Nemaline Myopathy, Principal Investigator and Teacher at the Department of Medical Genetics, University of Helsinki and the Folkhälsan Research Centre,...

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Associate Professor Coen A.C. Ottenheijm (The Netherlands)

My research group focuses on the mechanisms that cause muscle weakness in patients with nemaline myopathy. I am fascinated by this disease for several reasons: First of all because it affects many children; since 4 years I have two little boys of my own (fortunately both are healthy), and since that time diseases that affect young children have my special attention.

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Gene Express

This new webpage brings together NM related science news. And when there is a quiet spell, we will try and squeeze something out of the researchers who we adore and respect so much for working hard to find the causes of nemaline myopathy, leading to developing treatments. Contributions are always welcome.

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Call for patients

Exciting opportunity for NM families and affected individuals!

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European NeuroMuscular Center (ENMC)

Most neuromuscular disorders are rare (orphan) diseases, meaning that fewer than 1 in 2,000 people are affected. They all cause a weakening of muscles, which could lead to tremendous disability. Because of this, international collaboration to accelerate our knowledge and discovery of new medicines in the field of neuromuscular diseases is extremely important.

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Scientific papers

You may require Acrobat Reader for some files available via this website. You can download the free software from www.adobe.com

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Useful links

Center for Jewish Genetics - CMD International Register - Click here to take a genetics quiz!

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Supporting MAP Nemaline

In 2010 Meriel (aged 21 months) was diagnosed with Nemaline myopathy, a very rare muscle condition with no treatment or cure, which changed the lives of her family overnight. Setting up a family fund like MAP Nemaline is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward.

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