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class="main-wrap"> <div id="wsite-content" class="wsite-elements wsite-not-footer"> <div class="wsite-section-wrap"> <div class="wsite-section wsite-body-section wsite-background-1" > <div class="wsite-section-content"> <div class="container"> <div class="wsite-section-elements"> <h2 class="wsite-content-title">Thank you for joining our recent webinar:</h2> <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0px;margin-right:0px;text-align:center"> <a href='/webinars.html'> <img src="/uploads/3/7/6/9/37691413/editor/webinar-2023-liver-issues-in-mtm-and-cnm-save-the-date.jpg?1680659027" alt="Picture" style="width:949;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div> <div><div style="height: 20px; overflow: hidden; width: 100%;"></div> <hr class="styled-hr" style="width:100%;"></hr> <div style="height: 20px; overflow: hidden; width: 100%;"></div></div> <h2 class="wsite-content-title">Learn about our advocacy for patient engagement in drug development:</h2> <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0px;margin-right:0px;text-align:center"> <a> <img src="/uploads/3/7/6/9/37691413/pfdd-banner_orig.png" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div> <h2 class="wsite-content-title" style="text-align:center;"><font size="5"><strong style="color: rgb(81, 81, 81);">Myotubular & Centronuclear Myopathy</strong><br /><strong style="color: rgb(81, 81, 81);">Externally-Led Patient-Focused Drug Development (PFDD)</strong><br /><strong style="color: rgb(81, 81, 81);">Virtual Meeting</strong></font><br /><br /><strong style="color:rgb(81, 81, 81)">August 3rd, 2021</strong><br /><strong style="color:rgb(81, 81, 81)">10:00 am EDT-3:00 pm EDT</strong></h2> <div class="paragraph" style="text-align:center;"><font color="#8640ae">The recording of this live event is now available for replay on-demand!  Click below, or use the Zoom link that you received if you already registered.</font></div> <div style="text-align:center;"><div style="height: 10px; overflow: hidden;"></div> <a class="wsite-button wsite-button-small wsite-button-highlight" href="https://us02web.zoom.us/webinar/register/WN_kPbPcQ12R1mEFuMQvW835g" target="_blank"> <span class="wsite-button-inner">Click Here to Watch On-Demand</span> </a> <div style="height: 10px; overflow: hidden;"></div></div> <div><div class="wsite-multicol"><div class="wsite-multicol-table-wrap" style="margin:0 -15px;"> <table class="wsite-multicol-table"> <tbody class="wsite-multicol-tbody"> <tr class="wsite-multicol-tr"> <td class="wsite-multicol-col" style="width:50%; padding:0 15px;"> <div class="paragraph"><strong><u>What is an "Externally-led Patient Focused Drug Development (PFDD) Meeting"?</u></strong><br /><br />The FDA states, “<em>Patient-focused drug development is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. As experts in what it is like to live with their conditions, patients are uniquely positioned to inform the understanding of the therapeutic context for drug development and evaluation</em>”. <br /><br />So, a PFDD meeting is a platform for the patient community to share the stories of how their lives are impacted by the disease and their hopes and priorities when it comes to any potential therapies.<br /><br />A PFDD meeting is <strong>not specific</strong> to any drug and therapy but rather a moment to hear the patient voice on the disease impact and <strong>what meaningful improvement looks like from the patient and caregiver perspective</strong>.<br /><br />("Externally-led" means that the meeting is being run by the patient community rather than being hosted by the FDA.)</div> </td> <td class="wsite-multicol-col" style="width:50%; padding:0 15px;"> <div class="paragraph"><strong style="color:rgb(81, 81, 81)"><u>Agenda (all times Eastern)</u><br />10:00  Welcome & Introductions</strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">10:10  Opening Remarks, </strong><em style="color:rgb(81, 81, 81)">Representative of the FDA</em><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">10:30 Overview of X-Linked Myotubular Myopathy & Centronuclear Myopathy </strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">11:00 Patient & Family Voice Panel Topic 1: Impact of MTM & CNM</strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">12:00 Current Therapeutic strategies for MTM & CNM</strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)"><em>12:30-1:00 Lunch Break</em></strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">1:00 Patient & Family Voice Panel Topic 2:</strong><span style="color:rgb(81, 81, 81)"> </span><strong style="color:rgb(81, 81, 81)">Meaningful Outcomes</strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">2:00 Patient Preferences & Risk/Benefit Considerations</strong><br /><span style="color:rgb(81, 81, 81)"> </span><br /><strong style="color:rgb(81, 81, 81)">2:30 Meeting Summary and Closing Remarks</strong></div> </td> </tr> </tbody> </table> </div></div></div> <h2 class="wsite-content-title" style="text-align:center;">Thank you for your interest in this important event!</h2> <div class="paragraph" style="text-align:center;">This PFDD is Co-Hosted and Moderated by the following MTM-CNM Patient Advocacy Organizations:</div> <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0px;margin-right:0px;text-align:center"> <a href='http://www.will-cure.org' target='_blank'> <img src="/uploads/3/7/6/9/37691413/will-cure-logo-web_orig.jpg" alt="Picture" style="width:auto;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div> <div><div class="wsite-image wsite-image-border-none " style="padding-top:10px;padding-bottom:10px;margin-left:0;margin-right:0;text-align:center"> <a> <img src="/uploads/3/7/6/9/37691413/published/mcfc-logo-2014-landscape-no-website.jpg?1626829405" alt="Picture" style="width:321;max-width:100%" /> </a> <div style="display:block;font-size:90%"></div> </div></div> <div><div style="height: 20px; overflow: hidden; width: 100%;"></div> <hr class="styled-hr" style="width:100%;"></hr> <div style="height: 20px; overflow: hidden; width: 100%;"></div></div> <div><div id="364451731666360058" align="center" style="width: 100%; overflow-y: hidden;" class="wcustomhtml"><form action="https://www.paypal.com/cgi-bin/webscr" method="post" target="_top"> <input type="hidden" name="cmd" value="_s-xclick"> <input type="hidden" name="hosted_button_id" value="Z8HZDBEDU4DXN"> <input type="image" src="https://www.paypalobjects.com/en_US/i/btn/btn_donateCC_LG.gif" border="0" name="submit" alt="PayPal - The safer, easier way to pay online!"> <img alt="" border="0" src="https://www.paypalobjects.com/en_US/i/scr/pixel.gif" width="1" height="1"> </form> </div> </div> <div><div style="height: 20px; overflow: hidden; width: 100%;"></div> <hr class="styled-hr" style="width:100%;"></hr> <div style="height: 20px; overflow: hidden; width: 100%;"></div></div> <h2 class="wsite-content-title" style="text-align:center;"><a href="/2019.html">We had a great time at the 2019 MTM-CNM Family Conference!<br />July 19-21, S</a>t. 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