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The Myotubular Trust added 3 new photos.

6 days ago

Please join us in wishing our 2018 London marathon runners, Tom Deakin and Leigh Jones, the very best of luck for Sunday's run. We cannot thank them enough for their tremendous support and hope they both enjoy the experience - especially crossing the finish line! ... See MoreSee Less

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The Myotubular Trust added 3 new photos.

1 week ago

Registration for the lovely London bridges 10 K walk is now open. Saturday May 12th, London Bridge 9.30am start. We'd love to see you there...
mailchi.mp/c007e7421dc3/10k-london-walk ... See MoreSee Less

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The Myotubular Trust shared MTM and CNM Patient Registry's post.

3 weeks ago

Español, Deutsch, Italiano, Polskie, Français, English
The patient registry for myotubular and centronuclear myopathy is available in all these languages; managed in a university setting; and has ethical approval from an Ethics Board. Gold standard in the vital world of rare disease patient registries. Do consider joining ... ... See MoreSee Less

MTM and CNM Patient Registry

Hi everyone! Please help us to spread the word about the Patient Registry, by sharing this link with anyone you know who may want to join. We can accept registrations from MTM or CNM patients, as well as female carriers of XLMTM, and registration is available in English, German, Spanish, Polish, Italian and French. Join online here: www.mtmcnmregistry.org

There are many reasons why patient registries are so important in rare diseases, including:
✔️ they provide doctors with information about the conditions, to help improve standards of care.
✔️ they support and encourage research by providing (anonymous) data about the conditions.
✔️ being part of a registry means that researchers or pharmaceutical companies can ask the Registry Curator to let participants know if there is a trial or research study that they might be eligible for.
✔️ real-world, patient-reported data, such as that held in patient registries can potentially reduce the need for placebo arms in clinical trials and helps to develop patient-centred outcome measures.

For more information about clinical trials and how they work, take a look at this handy guide on our website: www.mtmcnmregistry.org/how-clinical-trials-work

If you have any questions you can contact Jo, the Registry Curator, at joanne.bullivant@ncl.ac.uk.

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The Myotubular Trust

3 weeks ago

Well the oddest thing happened - when we posted our new website this morning, some sort of gremlin took you to the old one!! Trying again - do look at this one, you'll see a real difference this time .....

Welcome to our brand-new look website.
We would like to thank Richard Netherclift and the team at Insignia Creative, Torquay for their immense help and support in designing our beautiful new website! We are delighted that this is now available in multiple languages. ... See MoreSee Less

Myotubular Trust | Finding Strength

myotubulartrust.org

Myotubular and Centronuclear Myopathy are rare genetic muscle conditions that most commonly affect boys from birth, but will sometimes onset later in both boys and girls. The conditions cause profound muscle weakness and dangerously affect the muscles that control breathing and swallowing.

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The Myotubular Trust

4 weeks ago

Dynacure - the biotech formed in 2016 as a spin off from IGBMC (Institute of Genetic and Molecular and Cellular Biology) in Strasbourg - have launched a lovely new website. Also spotlighting some family stories. ... See MoreSee Less

DYN 101 | Dynacure

dynacure.com

Dynacure’s lead program, Dyn101, is modulating the expression of dynamin 2 for the treatment of centronuclear myopathies.

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Melanie Spring