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Action Duchenne visit PTC Therapeutics on World Duchenne Awareness Day 2017

Posted on: September 7th, 2017 | 0 comments

Today, Duchenne Parents Lynnette and Sam were joined by Richard Bridger and Leanne Barry at the PTC Therapeutics offices in Guildford.  We met with Ian Davidson, Callum Sinclair and Jackie Flaherty of PTC.
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Celebrating World Duchenne Awareness Day, we discussed many important topics, from improving standards of care, education and inclusion to the importance of the approval of Translarna and how this has paved the way for future potential treatments for Duchenne.
We felt privileged to meet you all and hear about your personal experiences of Duchenne. It really helps us and gives us purpose in what we do. We look forward to see you at the conference later in the year – Ian Davidson, PTC
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We, as a community have the ability to make a change by submitting your stories and testimonials to the FDA via gary@actionduchenne.org. Your viewpoint is important whether or not your child has been amenable to Translarna. Please get in touch to share your story.

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