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What is Fibrodysplasia Ossificans Progressiva (FOP)? Exploring the Rare Genetic Disorder with Leading Experts - Curetalks %
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Exploring the Rare Genetic Disorder with Leading Experts - Curetalks %</title> <link rel="canonical" href="https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/" /> <meta property="og:locale" content="en_US" /> <meta property="og:type" content="article" /> <meta property="og:title" content="What is Fibrodysplasia Ossificans Progressiva (FOP)? Exploring the Rare Genetic Disorder with Leading Experts - Curetalks %" /> <meta property="og:description" content="Fibrodysplasia ossificans progressiva (FOP) is an ultra rare disease, where soft tissues progressively turn into bone. FOP affects approximately 1 in 2 million people worldwide. This condition is caused by a mutation in the ACVR1 gene, which disrupts the body’s ability to regulate bone growth, leading to the formation of an extra-skeletal skeleton. Even minor […]" /> <meta property="og:url" content="https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/" /> <meta property="og:site_name" content="Curetalks" /> <meta property="article:publisher" content="https://www.facebook.com/CureTalks/" /> <meta property="article:published_time" content="2025-01-30T14:00:00+00:00" /> <meta property="article:modified_time" content="2025-02-20T18:23:15+00:00" /> <meta property="og:image" content="https://www.curetalks.com/wp-content/uploads/2025/01/Fibrodysplasia-Ossificans-Progressiva_1696x992_posterCS.jpg" /> <meta property="og:image:width" content="1696" /> <meta property="og:image:height" content="992" /> <meta property="og:image:type" content="image/jpeg" /> <meta name="author" content="Dr. Frederick S. Kaplan, Dr. Mona Al Mukaddam, Whitney Weldon, Priya Menon" /> <meta name="twitter:card" content="summary_large_image" /> <meta name="twitter:creator" content="@CureTalks" /> <meta name="twitter:site" content="@CureTalks" /> <meta name="twitter:label1" content="Written by" /> <meta name="twitter:data1" content="Dr. Frederick S. Kaplan, Dr. Mona Al Mukaddam, Whitney Weldon, Priya Menon" /> <meta name="twitter:label2" content="Est. reading time" /> <meta name="twitter:data2" content="2 minutes" /> <script type="application/ld+json" class="yoast-schema-graph">{"@context":"https://schema.org","@graph":[{"@type":"Article","@id":"https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/#article","isPartOf":{"@id":"https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/"},"author":[{"@id":"https://www.curetalks.com/#/schema/person/f09ef5156e6ecfb97c4869bd9fd32ff7"},{"@id":"https://www.curetalks.com/#/schema/person/59be02708ff7406a3513135a2409d890"},{"@id":"https://www.curetalks.com/#/schema/person/8dbf89ecbd25487ccec4ec29fa29f571"},{"@id":"https://www.curetalks.com/#/schema/person/d3f9b28067132351cf20dcf8c7556745"}],"headline":"What is Fibrodysplasia Ossificans Progressiva (FOP)? 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Recognized in Philadelphia magazine's Top Docs (2019–2023), she earned her medical degree from the American University of Beirut, completed residency at the University of Iowa, and fellowship at the Hospital of the University of Pennsylvania. She was board certified in Endocrinology in 2012.","url":"https://www.curetalks.com/panelist/mona/"},{"@type":"Person","@id":"https://www.curetalks.com/#/schema/person/8dbf89ecbd25487ccec4ec29fa29f571","name":"Whitney Weldon","description":"Whitney Weldon, diagnosed with FOP at the age of 9. Now living in NYC, Whitney is an action-oriented, self-starter with exceptional communication skills. A graduate of Georgetown University undergrad and a Master’s degree from New York University. Whitney combines ambition, curiosity, and an eagerness to learn with a “can-do” mentality in her daily life. Professionally, Whitney works at NYC’s Department of Transportation. She is known for her proactive approach and ability to drive initiatives forward. 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Added in Unicode 13. * * To test for support, we try to render it, and compare the rendering to how it would look if * the browser doesn't render it correctly (white flag emoji + transgender symbol). */ isIdentical = emojiSetsRenderIdentically( context, '\uD83C\uDFF3\uFE0F\u200D\u26A7\uFE0F', // as a zero-width joiner sequence '\uD83C\uDFF3\uFE0F\u200B\u26A7\uFE0F' // separated by a zero-width space ); if ( isIdentical ) { return false; } /* * Test for UN flag compatibility. 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England is a country in the United Kingdom, it * does not have a two letter locale code but rather a five letter sub-division code. * * To test for support, we try to render it, and compare the rendering to how it would look if * the browser doesn't render it correctly (black flag emoji + [G] + [B] + [E] + [N] + [G]). */ isIdentical = emojiSetsRenderIdentically( context, // as the flag sequence '\uD83C\uDFF4\uDB40\uDC67\uDB40\uDC62\uDB40\uDC65\uDB40\uDC6E\uDB40\uDC67\uDB40\uDC7F', // with each code point separated by a zero-width space '\uD83C\uDFF4\u200B\uDB40\uDC67\u200B\uDB40\uDC62\u200B\uDB40\uDC65\u200B\uDB40\uDC6E\u200B\uDB40\uDC67\u200B\uDB40\uDC7F' ); return ! isIdentical; case 'emoji': /* * Why can't we be friends? Everyone can now shake hands in emoji, regardless of skin tone! * * To test for Emoji 14.0 support, try to render a new emoji: Handshake: Light Skin Tone, Dark Skin Tone. * * The Handshake: Light Skin Tone, Dark Skin Tone emoji is a ZWJ sequence combining 🫱 Rightwards Hand, * 🏻 Light Skin Tone, a Zero Width Joiner, 🫲 Leftwards Hand, and 🏿 Dark Skin Tone. * * 0x1FAF1 == Rightwards Hand * 0x1F3FB == Light Skin Tone * 0x200D == Zero-Width Joiner (ZWJ) that links the code points for the new emoji or * 0x200B == Zero-Width Space (ZWS) that is rendered for clients not supporting the new emoji. * 0x1FAF2 == Leftwards Hand * 0x1F3FF == Dark Skin Tone. * * When updating this test for future Emoji releases, ensure that individual emoji that make up the * sequence come from older emoji standards. */ isIdentical = emojiSetsRenderIdentically( context, '\uD83E\uDEF1\uD83C\uDFFB\u200D\uD83E\uDEF2\uD83C\uDFFF', // as the zero-width joiner sequence '\uD83E\uDEF1\uD83C\uDFFB\u200B\uD83E\uDEF2\uD83C\uDFFF' // separated by a zero-width space ); return ! isIdentical; } return false; } /** * Checks emoji support tests. * * This function may be serialized to run in a Worker. Therefore, it cannot refer to variables from the containing * scope. Everything must be passed by parameters. * * @since 6.3.0 * * @private * * @param {string[]} tests Tests. * @param {Function} browserSupportsEmoji Reference to browserSupportsEmoji function, needed due to minification. * @param {Function} emojiSetsRenderIdentically Reference to emojiSetsRenderIdentically function, needed due to minification. * * @return {SupportTests} Support tests. */ function testEmojiSupports( tests, browserSupportsEmoji, emojiSetsRenderIdentically ) { var canvas; if ( typeof WorkerGlobalScope !== 'undefined' && self instanceof WorkerGlobalScope ) { canvas = new OffscreenCanvas( 300, 150 ); // Dimensions are default for HTMLCanvasElement. } else { canvas = document.createElement( 'canvas' ); } var context = canvas.getContext( '2d', { willReadFrequently: true } ); /* * Chrome on OS X added native emoji rendering in M41. Unfortunately, * it doesn't work when the font is bolder than 500 weight. 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Exploring the Rare Genetic Disorder with Leading Experts&url=https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/&via=curetalk"><img src="https://platform-cdn.sharethis.com/img/twitter.svg"></a> <a class="dropdown-item st-btn" rel="nofollow" id ="5211" target="_blank" data-network="facebook" href="http://www.facebook.com/sharer.php?u=https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/&t=What+is+Fibrodysplasia+Ossificans+Progressiva+%28FOP%29%3F+Exploring+the+Rare+Genetic+Disorder+with+Leading+Experts"><img src="https://platform-cdn.sharethis.com/img/facebook.svg"></a> <a class="dropdown-item st-btn" rel="nofollow" id ="5211" target="_blank" data-network="linkedin" href="http://www.linkedin.com/shareArticle?mini=true&url=https://www.curetalks.com/what-is-fibrodysplasia-ossificans-progressiva-fop-exploring-the-rare-genetic-disorder-with-leading-experts/"><img src="https://platform-cdn.sharethis.com/img/linkedin.svg"></a> </div> </div> <div class="col-md-12"> <hr> </div> <div class="col-md-12"> <h5 class="talk-title">What is Fibrodysplasia Ossificans Progressiva (FOP)? Exploring the Rare Genetic Disorder with Leading Experts </h5> <div class="talk-description hide-img"> <p>Fibrodysplasia ossificans progressiva (FOP) is an ultra rare disease, where soft tissues progressively turn into bone. FOP affects approximately 1 in 2 million people worldwide. This condition is caused by a mutation in the <strong>ACVR1 gene</strong>, which disrupts the body’s ability to regulate bone growth, leading to the formation of an extra-skeletal skeleton. Even minor injuries or surgeries can trigger rapid bone formation, severely limiting mobility and significantly impacting quality of life. With no known cure, FOP poses unique challenges for patients and medical professionals alike.</p> <p>Join us as we take a deep dive into the world of FOP with leading experts Dr. Frederick S. Kaplan and Dr. Mona Al Mukaddam from University of Pennsylvania and patient advocate Whitney Weldon. </p> <p>In this episode, we’ll explore:</p> <ul> <li>The genetic underpinnings of FOP and how mutations in the <strong>ACVR1 gene</strong> lead to this condition.</li> <li>The challenges of early diagnosis </li> <li>Current advances in research, including potential treatments and the global effort to improve patient outcomes.</li> <li>Insights into the day-to-day struggles of living with FOP and the importance of holistic care.</li> </ul> <p>Tune in to gain valuable insights and join the conversation about one of the rarest and most intriguing medical conditions.</p> </div> </div> </div> <div class="row align-items-center"> <div class="col-md-3" style="width: 125px; max-width: 125px;"> <h3 class="list-of-panelists-heading hide-img">Panelists</h3> </div> <div class="col-md-9 author-grid"> <div class="list-of-panelists col-md-13 hide-img"> <ul class="effects"> <li> <a href="https://www.curetalks.com/panelist/kaplan/" class="img fadeHover"> <img width="100" height="100" src="https://www.curetalks.com/wp-content/uploads/2025/01/Dr.-KaplanWB-150x150.jpg" class="attachment-100x100 size-100x100" alt="Dr. Frederick S. Kaplan" /> <div class="overlay"> <span class="panelist-name expand">Dr. Frederick S. Kaplan</span> </div> </a> </li> <li> <a href="https://www.curetalks.com/panelist/mona/" class="img fadeHover"> <img width="100" height="100" src="https://www.curetalks.com/wp-content/uploads/2025/01/Dr.-Mona-Al-MukkadamWB-150x150.jpg" class="attachment-100x100 size-100x100" alt="Dr. Mona Al Mukaddam" loading="lazy" /> <div class="overlay"> <span class="panelist-name expand">Dr. Mona Al Mukaddam</span> </div> </a> </li> <li> <a href="https://www.curetalks.com/panelist/whitney/" class="img fadeHover"> <img width="100" height="100" src="https://www.curetalks.com/wp-content/uploads/2025/01/panelists_BWimage_-150x150.jpg" class="attachment-100x100 size-100x100" alt="Whitney Weldon" loading="lazy" /> <div class="overlay"> <span class="panelist-name expand">Whitney Weldon</span> </div> </a> </li> <li> <a href="https://www.curetalks.com/panelist/priyamenon/" class="img fadeHover"> <img width="100" height="100" src="https://www.curetalks.com/wp-content/uploads/2020/01/PriyaMenon-150x150.jpg" class="attachment-100x100 size-100x100" alt="Priya Menon" loading="lazy" /> <div class="overlay"> <span class="panelist-name expand">Priya Menon</span> </div> </a> </li> </ul> </div> </div> <div class="col-md-12"> <div class="hide-img"> <div class="talk-meta2"> <span class="talk-meta-date"> Talk Recorded on Jan 30, 2025, 10:00 am EST </span> <!-- <span title="audio listen count" class="listen single-post-listen" id="yas_5211" style="background: url(https://www.curetalks.com/wp-content/themes/curetalk/img/icon_listen.png) no-repeat left 50%;"> <a href="#" id="tot_listen_5211">0</a> </span> --> <span class="embed" role="button"><a role="button" class="btn btn-xs" id="embed_btn" style="font-family: sans-serif; color: rgb(156, 158, 154);"> </> Embed </a> </span> </div> <div class="embed_code" style="border-right: 1px solid rgb(204, 204, 204); border-bottom: 1px solid rgb(204, 204, 204); border-left: 1px solid rgb(204, 204, 204); border-image: initial; border-top: none; text-align: left; padding: 15px; padding-right: 140px; position: relative; "><iframe src="https://www.curetalks.com/event-embed/5211" id="frame" frameborder="0" scrolling="no" style="width: 100%; overflow: hidden; min-height: 500px;" ></iframe> <input type="text" style="opacity: 0;" id="code_value" value= '<iframe src="https://www.curetalks.com/event-embed/5211" id="frame" frameborder="0" scrolling="no" style="width: 100%; overflow: hidden; min-height: 500px;" ></iframe>'> <div class="clipboard" > <span class="copy pull-right" role="button"><a title="Copy" role="button" class="fa fa-copy btn btn-primary btn-xs" id="copy_btn"> Copy to Clipboard </a> </span> </div> </div> </div> </div> </div> </section> </div> </div> </div> </section> <footer> <div class="container"> <div class="row"> <div class="col-md-12 mt-5 mb-5 call-to-action text-center d-flex align-items-center justify-content-center"> <h2 class="d-inline-block m-0">Connect, Learn & Stay Healthy</h2> </div> <div class="col-md-3"> <img src="https://www.curetalks.com/wp-content/uploads/2019/12/logo.png" alt="Curetalks Logo"> </div> <div class="col-md-3 "> <h4>Company</h4> <ul> <!-- hide be on talk and request a talk menu <li class="menu-item"><a data-toggle="modal" data-target="#beonourshow" class="popup-with-form">Be on a Talk</a></li> <li class="menu-item"><a data-toggle="modal" data-target="#request-invitation" class="popup-with-form">Request a Talk</a></li> --> <li><a href="http://www.trialx.com/curetalks" target="_blank">About</a></li> </ul> </div> <div class="col-md-3"> <h4>Sort by</h4> <ul> <li><a href="https://www.curetalks.com/?sortby=listens">Most Listens</a></li> <li><a href="https://www.curetalks.com/?sortby=likes">Likes</a></li> <li><a href="https://www.curetalks.com/?sortby=shares">Shares</a></li> <li><a href="https://www.curetalks.com/?sortby=comments">Comments</a></li> </ul> </div> <div class="col-md-3 "> <h4>Upcoming CureTalks</h4> <ul> <li> <a href="https://www.curetalks.com/binge-eating-disorder-can-deep-brain-stimulation-be-a-potential-solution/">Binge Eating Disorder: Can Deep Brain Stimulation be a Potential Solution? </a> </li> </ul> </div> </div> <div class="row" id="copyright"> <div class="col-md-6"> <p>© 2025 <a href="https://www.curetalks.com/">CureTalks</a>. 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var specialElementHandlers = { '#editor': function (element, renderer) { return true; } }; var data = document.getElementById('toHTMLtranscript'); var date = new Date(); margins = { top: 80, bottom: 60, left: 40, left: 40, width: 200 }; // html2canvas(data).then(canvas => { // var doc = new jsPDF(); // doc.addImage(logo64bit, 'JPEG', 5, 10, 50, 10); var doc = new jsPDF("p", "", "a4"); var totalParagraph = ($('.full-v>p').length%3==0); var iteration = 0; doc.addImage(logo64bit, 'JPEG', 5, 10, 50, 10); textlines = doc.setFont('Arial') .setFontSize(12) .splitTextToSize($('.full-v').html(), 100.25); let verticalOffset = 0.5; doc.text( 5, 10, textlines ) // verticalOffset += (textlines + 2) * 50 / 200; $('.full-v>p').each(function(index, value){ var spanText = '<p>'+$(value).text()+'</p>'; console.log(index, value,(index%2)==0); if((index%5)==0){ // doc.addPage(); doc.addImage(logo64bit, 'JPEG', 5, 10, 50, 10); // doc.setLineWidth(0.3); // doc.line(200, 22, 5, 22); // textlines = doc.setFont('Arial') // .setFontSize(12) // .splitTextToSize($(value).text(), 100.25); // let verticalOffset = 0.5; // doc.text( 10, verticalOffset + 22 / 272, textlines ) // verticalOffset += (textlines + 2) * 50 / 200; // verticalOffset += (textlines + 2) * 50 / 200; }else{ doc.addImage(logo64bit, 'JPEG', 5, 10, 50, 10); // doc.setLineWidth(0.3); // doc.line(200, 22, 5, 22); // textlines = doc.setFont('Arial') // .setFontSize(12) // .splitTextToSize($(value).text(), 200.25); // let verticalOffset = 0.5; // doc.text( 10, verticalOffset + 202 / 272, textlines ) // verticalOffset += (textlines + 2) * 50 / 200; } iteration++; }); // var pageCount = doc.internal.getNumberOfPages(); // console.log('Number oF Pages '+pageCount); // for (var i = 1; i < pageCount; i++) { // let pageCurrent = doc.internal.getCurrentPageInfo().pageNumber; // if(pageCurrent==i){ // doc.addPage(); // doc.setLineWidth(0.3); // doc.line(200, 22, 5, 22); // doc.setFont("helvetica"); // doc.addImage(logo64bit, 'JPEG', 5, 10, 50, 10); // } // } doc.save ('download'+this.id+ '_'+date.getTime()+'.pdf'); // }); 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