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trending: collaboration with leading research charity two new research projects funded three complementary myotubular trust research projects home contact us about myotubular & centronuclear myopathy what we do people behind the trust our story in film newsletters contact research research news accelerating treatments clinical overview publications trials & studies patient registry scientific advisory board call for grants glossary families family stories getting a diagnosis managing the conditions patient registry family conference 2018 other organisations get involved fundraising news design your own regular donations companies hope walk weekend schools volunteer ebay shopping buy wristbands calendar of events select page myotubular and centronuclear myopathy causes life-threatening muscle weakness in infants and adults in the weakest form a baby is at severe risk of dying in the first weeks of life since 2006 we have led the way in supporting families and investing in research join us in finding strength for myotubular and centronuclear myopathy contact get in touch contact us for more information, to join the patient registry, to send us a message or to ask a specific question… companies adopt us join the companies who have supported us with fundraising events, pro bono support or as a charity of the year… donate donate here just click to follow the instructions for a secure way of paying money directly into our caf bank account … 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. in the most severe form, infants are at risk of dying in their first weeks of life. since 2006, the myotubular trust has lead the way in both supporting families and investing in research to find a treatment and a cure. join us in changing the lives of those living with these conditions. together we are stronger. 2018 family conference please join us in london on 14th & 15th july 2018 join the patient registry… help to accelerate the research help us plan ahead… set up a regular payment read about recent research… updates from our scientific community challenge yourself… be inspired by our fundraising news tweets by myotubulartrust the myotubular trust 13 hours ago news today from audentes therapeutics announces that rmat, or regenerative medicine advanced therapy designation, has been granted by the fda (us food & drug administration) which can essentially shorten the time to market for innovative medicines and treatments. this signifies another major milestone in the regulatory process for the gene therapy drug at132, which will be aimed at treating patients with x-linked myotubular myopathy. investors.audentestx.com/phoenix.zhtml?c=254280&p=irol-newsarticle&id=2364254 ... see more see less press release - audentes therapeutics investors.audentestx.com , /prnewswire/ -- , inc. (nasdaq: bold), a biotechnology company focused on developing and commercializing innovative gene therapy products for patients living with serious, life-threatening rare diseases, today announced that the () granted regenerative medicine advanced therapy (rmat) designation... view on facebook · share share on facebook share on twitter share on google plus share on linked in share by email likes: 21 shares: 8 comments: 0 comment on facebook the myotubular trust 4 days ago lovely, simple short film by the european medicines agency to explain how new drugs and treatments get approved in the eu. how is a new medicine for your disease approved by the european medicines agency? find out more in this video. script: good news! a new medicine has been app... ... see more see less view on facebook · share share on facebook share on twitter share on google plus share on linked in share by email likes: 11 shares: 1 comments: 0 comment on facebook the myotubular trust 1 week ago latest addition to the european family conference online videos includes 'progress in gene therapy development for myotubular myopathy' - back to back presentations from dr ana buj bello - the scientist who established proof of principle for gene therapy for xlmtm, and dr suyash prasad, chief scientific officer from audentes therapeutics, the biotech company who are taking gene therapy through clinical trial. for our many supporters who have been contributing to the myotubular trust's ability to fund research you can see with your own eyes the real and tangible difference you make. we remain ever grateful for your support #togetherevenstronger ... see more see less family conference 2018 | myotubular trust myotubulartrust.org we were delighted to have been joined by many adults and children affected by myotubular and centronuclear myopathies, their families, doctors and carers at our family conference. the conference was held on 14th and 15th july 2018 in london and was hosted jointly by the myotubular trust and znm – ... view on facebook · share share on facebook share on twitter share on google plus share on linked in share by email likes: 13 shares: 5 comments: 0 comment on facebook the myotubular trust 2 weeks ago continuing positive results from audentes from the first group of patients in the aspiro gene therapy clinical trial. the next update will be provided at the world muscle society on 2nd - 6th october 2018. read more on our website: myotubulartrust.org/audentes-therapeutics-reports-second-quarter-2018-financial-results-and-provi... ... see more see less audentes therapeutics reports second quarter 2018 financial results and provides update on aspiro, the phase 1/2 clinical trial of at132 in patients with x-linked myotubular myopathy | myotubular trust myotubulartrust.org audentes therapeutics reports second quarter 2018 financial results and provides update on aspiro, the phase 1/2 clinical trial of at132 in patients with x-linked myotubular myopathy aug 7, 2018 | audentes therapeutics announced continuing positive interim data from the group of patients receiving t... view on facebook · share share on facebook share on twitter share on google plus share on linked in share by email likes: 10 shares: 3 comments: 0 comment on facebook the myotubular trust shared audentes therapeutics, inc.'s photo. 2 weeks ago reminder - 24-week clinical data & muscle biopsy results from the first three patients treated in the aspiro gene therapy xlmtm clinical trial will be part of audentes therapeutics q2 financial results release tomorrow. these results will be published in a webinar and conference call tomorrow 7th august at 8am est - 1pm uk time. audentes to release second quarter 2018 financial results and provide update on aspiro, the phase 1/2 study of at132 in patients with x-linked myotubular myopathy: bit.ly/2smehxr ... see more see less view on facebook · share share on facebook share on twitter share on google plus share on linked in share by email likes: 16 shares: 2 comments: 0 comment on facebook load more view on facebook get in touch... general enquiries: [email protected] research enquiries: [email protected] privacy policy uk registered charity no: 1137177 (formerly 1113809) founding patron: professor victor dubowitz, emeritus professor of paediatrics, imperial college london; president of world muscle society scientific advisor: professor francesco muntoni, professor of paediatric neurology, university college london website design by insignia creative ltd uk choose your language... powered by ultimate auction

URL analysis for myotubulartrust.org

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http://myotubulartrust.org/get-involved/hope-walk-weekend/
http://myotubulartrust.org/research/journal-publications/
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