This article first appeared in The Information Point newsletter Our World in 2018.
Since 2006, the Myotubular Trust has lead the way in both supporting families and investing in research to find a treatment and a cure. In 10 years they have raised in excess of £1.85 million and funded 13 major research grants internationally.
The Trust recently launched a new website, available in all languages, which features a large area about research including information on trials and studies. There is also an area for families which includes family stories, information on getting a diagnosis and managing the condition.
You can visit the new website below.