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Newsletter for the centronuclear and myotubular myopathy community

Issue 1/2020

 

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Dynacure news 

Latest news from Dynacure.

Read more: Dynacure

 

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Myotubular Trust news

Information about the 2020 grant call and UK patient webinar.

Read more: Myotubular Trust news

CNM/MTM community members.

Female carriers of x-linked myotubular myopathy invited to take part in new study 

A new European study is looking into the possible muscle symptoms in female carriers of myotubular myopathy

Read more: 
Female carriers of X-linked myotubular myopathy invited to take part in new study

 

Dwarf sunflowers growing in wellington boots.

The Big Sunflower Project

2020 is the 10th anniversary year of The Big Sunflower Project and over 290 people are participating in the UK, on the Isle of Man, France, Greece, Germany, Sweden, Australia and the Philippines. 

Read more: The Big Sunflower Project

Hari with his mum and dad.

Hospital

An episode of the television programme Hospital recently featured Hari, a child with myotubular myopathy.

Read more: Hospital

 

Logan.

Good news stories

2020 has been a difficult time for everyone but life has been going on. Read some good news stories from the CNM/MTM community.

Read more: Good news stories

  


 

 

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