{"id":281735,"date":"2025-10-29T16:15:24","date_gmt":"2025-10-29T20:15:24","guid":{"rendered":"https:\/\/rarediseases.org\/?p=281735"},"modified":"2025-10-31T14:47:55","modified_gmt":"2025-10-31T18:47:55","slug":"2025-nord-breakthrough-summit","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/2025-nord-breakthrough-summit\/","title":{"rendered":"From Voices to Breakthroughs: Celebrating the 2025 NORD Breakthrough Summit"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281751\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_2355-social-media-1024x683.jpg\" alt=\"Youth rare disease advocates on stage during a NORD Summit panel moderated by Mike Porath of The Mighty\" width=\"800\" height=\"533\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_2355-social-media-1024x683.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_2355-social-media-300x200.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_2355-social-media-768x512.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_2355-social-media-1536x1024.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_2355-social-media-2048x1366.jpg 2048w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/p>\n<p><span data-contrast=\"none\">The 2025 NORD<sup>\u00ae<\/sup> Rare Diseases &amp; Orphan Products Breakthrough Summit<sup>\u00ae<\/sup> was more than a gathering. It was a declaration. Well over 800 patient advocates, families, researchers, clinicians, and industry showed up to drive progress for the 30 million-plus Americans living with rare diseases. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Amid a government shutdown that has disrupted health care, slowed research, and strained complex systems, you came to the NORD Breakthrough Summit with questions \u2013 and a commitment to creating solutions.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">What makes the rare disease community remarkable is how we respond to the uncertainty we face every day: with persistence, creativity, and unwavering resolve. This was on full display during this year\u2019s event, captured through our theme:<\/span> <strong><i>From Voices to Breakthroughs<\/i><\/strong><span data-contrast=\"none\">.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:0,&quot;335551620&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Throughout the event, we asked: <\/span><b><span data-contrast=\"none\">What are you raising your voice for?<\/span><\/b><span data-contrast=\"none\"> The answers were moving, diverse, and deeply inspiring. Keep reading to delve into our key takeaways and discover how you can keep the momentum going.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/p>\n<p style=\"text-align: center;\"><a class=\"button sm-mt \" href=\"https:\/\/nordsummit.org\/nord-summit-gallery-2025\/\" target=\"_blank\" rel=\"noopener nofollow\">View Event Photos<\/a><\/p>\n<figure id=\"attachment_281788\" aria-describedby=\"caption-attachment-281788\" style=\"width: 800px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-281788\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_1735-social-media-1024x683.jpg\" alt=\"Three students posing with NORD tote bags at the 2026 Breakthrough Summit\" width=\"800\" height=\"533\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_1735-social-media-1024x683.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_1735-social-media-300x200.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_1735-social-media-768x512.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_1735-social-media-1536x1024.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_1735-social-media-2048x1366.jpg 2048w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><figcaption id=\"caption-attachment-281788\" class=\"wp-caption-text\">This year&#8217;s NORD Breakthrough Summit featured the largest gathering of our NORD <a href=\"https:\/\/rarediseases.org\/get-involved\/students-for-rare\/\">Students for Rare<\/a> chapters to date!<\/figcaption><\/figure>\n<h1>Voices That Echoed<\/h1>\n<p><span data-contrast=\"none\">From the main stage to one-on-one moments, voices rose for:<\/span><\/p>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"3\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559683&quot;:0,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Patients and families leading<\/span><\/b><span data-contrast=\"auto\"> research and treatment development from the start and staying at the center of every decision.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"3\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559683&quot;:0,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Smarter, more flexible rare disease pathways <\/span><\/b><span data-contrast=\"auto\">that allow regulatory decisions to consider the full patient experience,\u00a0<\/span><span data-contrast=\"auto\">even when data is limited. For example, the newly created <\/span><a href=\"https:\/\/www.fda.gov\/industry\/commissioners-national-priority-voucher-cnpv-pilot-program\" target=\"_blank\" rel=\"noopener nofollow\"><span data-contrast=\"none\">Food and Drug Administration Commissioner\u2019s National Priority Voucher pilot program,<\/span><\/a><span data-contrast=\"auto\"> which reduces review times to 1-2 months from 10-12 months. Speakers on the Navigating the Regulatory Landscape panel heralded this as promising, although the impact on other applications remains to be seen.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"3\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559683&quot;:0,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"3\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Increased and sustainable funding<\/span><\/b><span data-contrast=\"auto\"> to accelerate rare disease discoveries and deliver life-saving treatments faster and more widely.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"3\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559683&quot;:0,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"5\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Policies that work for rare diseases,<\/span><\/b><span data-contrast=\"auto\"> including renewing the Rare Pediatric Disease Priority Review Voucher (RPD PRV), which incentivizes companies to develop treatments for children with rare diseases.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"3\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559683&quot;:0,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"6\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Access for all, everywhere,<\/span><\/b><span data-contrast=\"auto\"> ensuring every person can participate in clinical trials, receive care, and benefit from new treatments, no matter where they live.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"3\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559683&quot;:0,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"7\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Whole-person care,<\/span><\/b><span data-contrast=\"auto\"> including mental health support for patients and caregivers, recognizing the full experience of living with a rare condition.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span class=\"NormalTextRun SCXW247443283 BCX0\">Registered attendees have access to session recordings in the event app. If you missed the event, <\/span><span class=\"NormalTextRun SCXW247443283 BCX0\">don\u2019t<\/span><span class=\"NormalTextRun SCXW247443283 BCX0\"> worry! Session recordings will be made available for purchase in December. <a href=\"https:\/\/rarediseases.org\/newsletter\/\">Join NORD\u2019s email list<\/a> so you <\/span><span class=\"NormalTextRun SCXW247443283 BCX0\">don\u2019t<\/span><span class=\"NormalTextRun SCXW247443283 BCX0\"> miss a moment.<\/span><\/p>\n<div class=\"row justify-content-center\"><iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/Udiixz-FUPM\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/div>\n<div><\/div>\n<h1>Advancing Breakthroughs<\/h1>\n<p><span class=\"TextRun SCXW75093083 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"none\"><span class=\"NormalTextRun CommentStart CommentHighlightPipeClicked CommentHighlightClicked CommentImportant SCXW75093083 BCX0\">B<\/span><span class=\"NormalTextRun CommentHighlightClicked CommentImportant SCXW75093083 BCX0\">reakthroughs highlighted during the event included<\/span><span class=\"NormalTextRun CommentHighlightClicked CommentImportant SCXW75093083 BCX0\">:<\/span><\/span><\/p>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">An approved therapy for Barth Syndrome: <\/span><\/b><span data-contrast=\"auto\">After a decade of patient-driven research and advocacy, including natural history studies, expanded access, and tailored endpoints, the Food and Drug Administration (FDA) in September granted accelerated approval for Stealth BioTherapeutics\u2019 therapy for <a href=\"https:\/\/rarediseases.org\/rare-diseases\/barth-syndrome\/\">this ultra-rare condition<\/a>.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<figure id=\"attachment_281740\" aria-describedby=\"caption-attachment-281740\" style=\"width: 800px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-281740\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5313-social-media-1024x683.jpg\" alt=\"Shelley Bowen of the Barth Syndrome Foundation presenting at the NORD Breakthrough Summit\" width=\"800\" height=\"533\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5313-social-media-1024x683.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5313-social-media-300x200.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5313-social-media-768x512.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5313-social-media-1536x1024.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5313-social-media-2048x1366.jpg 2048w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><figcaption id=\"caption-attachment-281740\" class=\"wp-caption-text\">The Barth Syndrome Foundation\u2019s Shelley Bowen shared her family\u2019s deeply personal advocacy story while celebrating the first-ever approved treatment.<\/figcaption><\/figure>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">AI is speeding up rare disease drug discovery:<\/span><\/b><span data-contrast=\"auto\"> AI has significantly reduced early-stage drug development timelines, and AI-predicted molecules have successfully moved into clinical trials, including for rare conditions like <a href=\"https:\/\/rarediseases.org\/rare-diseases\/neurofibromatosis-type-1-nf1\/\">neurofibromatosis type 1 (NF1)<\/a>.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"3\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Sensory restoration through gene therapy: <\/span><\/b><span data-contrast=\"auto\">Regeneron Pharmaceuticals\u2019 gene therapy targeting congenital hearing loss successfully restored hearing in children, marking one of the first demonstrations of sensory restoration through gene therapy and offering new hope beyond cochlear implants.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"4\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Potential for bipartisan progress: <\/span><\/b><span data-contrast=\"auto\">Staff from the offices of Rep. Gus Bilirakis (R-FL) and Rep. Doris Matsui (D-CA), both members of the House committee overseeing much of the nation\u2019s health care legislation, emphasized a shared commitment to advancing policies that support the rare disease community. They noted a particular interest in returning to bipartisan efforts like the Accelerating Kids\u2019 Access to Care Act of 2025, which both lawmakers co-sponsored and which continues to enjoy broad cross-party support.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"5\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">We are stronger together: <\/span><\/b><span data-contrast=\"auto\">The NORD Breakthrough Summit underscored the power of community \u2014 when one rare disease community experiences progress, we all move forward. From fast friendships formed among those who truly understand, to youth advocates like Micah, who founded <a href=\"https:\/\/www.transplanttz.org\/about\" target=\"_blank\" rel=\"noopener nofollow\">Transplant Teenz<\/a> so no other kids would experience the lack of peer support he faced after receiving a heart transplant, we united in our shared mission. <\/span><\/li>\n<\/ul>\n<figure id=\"attachment_281780\" aria-describedby=\"caption-attachment-281780\" style=\"width: 800px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-281780\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Micah-edit-1024x915.jpg\" alt=\"Micah Clayborne standing in front of an event sign on which he appears. The sign says, &quot;From voices to breakthroughs.\" width=\"800\" height=\"715\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Micah-edit-1024x915.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Micah-edit-300x268.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Micah-edit-768x686.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Micah-edit-1536x1373.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Micah-edit.jpg 1768w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><figcaption id=\"caption-attachment-281780\" class=\"wp-caption-text\">Teen speaker Micah Clayborne, Danon disease advocate and Founder of Transplant Teenz, was an integral part of the 2025 NORD Breakthrough Summit!<\/figcaption><\/figure>\n<h1>Moments That Moved Us<\/h1>\n<p><span data-contrast=\"auto\">From powerful testimonies to joyful moments of connection, these highlights captured the heart of the rare disease community. You are why we continue to raise our voices and push for breakthroughs. Here\u2019s a glimpse of some of the moments that moved us at the 2025 Breakthrough Summit.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281749\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5656-social-media-1024x698.jpg\" alt=\"Audience members moved by a NORD Breakthrough Summit speaker\" width=\"800\" height=\"545\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5656-social-media-1024x698.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5656-social-media-300x204.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5656-social-media-768x523.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5656-social-media-1536x1046.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_5656-social-media-2048x1395.jpg 2048w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/p>\n<div class=\"row\" style=\"margin-top: 1rem;\">\n<div class=\"col-md-4\">\n<div style=\"width: 720px;\" class=\"wp-video\"><video class=\"wp-video-shortcode\" id=\"video-281735-1\" width=\"720\" height=\"1280\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Klobuchar.mp4?_=1\" \/><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Klobuchar.mp4\">https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Klobuchar.mp4<\/a><\/video><\/div>\n<\/div>\n<div class=\"col-md-8 d-flex flex-column justify-content-center\" style=\"font-size: 1.125rem; line-height: 1.5em;\"><b style=\"font-size: 1.125rem; line-height: 1.5em;\">\u201cWe Are Moving Forward Together\u201d<\/b><br \/>\nAmid the third week of a government shutdown that kept many of our partners from attending in person, a surprise appearance by Sen. Amy Klobuchar of Minnesota \u2013 a co-chair of the bipartisan Rare Disease Congressional Caucus \u2013 brought the crowd to their feet. She shared how her own daughter\u2019s early complex medical challenges continue to inform and shape her commitment to fight for millions of families and individuals with rare diseases.<\/div>\n<\/div>\n<div class=\"row\">\n<div class=\"col-md-8 d-flex flex-column justify-content-center\" style=\"font-size: 1.125rem; line-height: 1.5em;\"><b style=\"font-size: 1.125rem; line-height: 1.5em;\"><span data-contrast=\"auto\">Singing \u2013 and Dancing \u2013 in the Rain<\/span><\/b><br \/>\nDynamic mother-daughter duo Donna and Ashley Appell brought new meaning to \u201cumbrella organization,\u201d recognizing NORD as the protector and champion of our incredible community, rain or shine. They brought their zebra umbrella out to remind us that \u201cLife isn\u2019t about waiting for the storms to pass but learning to dance in the rain.\u201d<\/div>\n<div class=\"col-md-4\">\n<div style=\"width: 800px;\" class=\"wp-video\"><video class=\"wp-video-shortcode\" id=\"video-281735-2\" width=\"800\" height=\"450\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Umbrella.mp4?_=2\" \/><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Umbrella.mp4\">https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Umbrella.mp4<\/a><\/video><\/div>\n<\/div>\n<\/div>\n<div class=\"row\" style=\"margin-top: 1rem;\">\n<div class=\"col-md-4\">\n<div style=\"width: 800px;\" class=\"wp-video\"><video class=\"wp-video-shortcode\" id=\"video-281735-3\" width=\"800\" height=\"450\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Golden.mp4?_=3\" \/><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Golden.mp4\">https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Golden.mp4<\/a><\/video><\/div>\n<\/div>\n<div class=\"col-md-8 d-flex flex-column justify-content-center\" style=\"font-size: 1.125rem; line-height: 1.5em;\"><b style=\"font-size: 1.125rem; line-height: 1.5em;\">Shining Like We\u2019re Born to Be <\/b><span>Rare disease or not, kids are kids, and in 2025, that means being very into<em> K-Pop Demon Hunters<\/em>. Before her panel, 11-year-old Emmelina Torres lit up the room with a full-hearted singalong to \u201cGolden,\u201d showing us that kids with rare diseases deserve to be seen in all their joy, talent, and personality.<\/span><\/div>\n<\/div>\n<div class=\"row\" style=\"margin-top: 1rem;\">\n<div class=\"col-md-8 d-flex flex-column justify-content-center\" style=\"font-size: 1.125rem; line-height: 1.5em;\"><b style=\"font-size: 1.125rem; line-height: 1.5em;\">Holding Onto Hope<\/b><br \/>\nWith extraordinary courage and love, Shelley Bowen shared her story of turning the unthinkable loss of her sons Evan and Michael into lasting impact \u2013 the first approved treatment for Barth Syndrome. Shelley embodies the rare community\u2019s unwavering belief in fighting for better tomorrows, even through profound loss.<\/div>\n<div class=\"col-md-4\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281743\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-816x1024.jpeg\" alt=\"Shelley Bowen of the Barth Syndrome Foundation hugging another community member after her speech at the NORD Breakthrough Summit\" width=\"800\" height=\"1003\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-816x1024.jpeg 816w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-239x300.jpeg 239w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-768x963.jpeg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-1224x1536.jpeg 1224w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-1633x2048.jpeg 1633w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_0588-scaled.jpeg 2041w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/div>\n<\/div>\n<p><b><span data-contrast=\"auto\">Smashing Pumpkins (not the band)<\/span><\/b><br \/>\n<span data-contrast=\"auto\">After sharing what it\u2019s like to live with <a href=\"https:\/\/rarediseases.org\/rare-diseases\/mucopolysaccharidosis-type-i\/\">mucopolysaccharidosis type I (MPS I)<\/a> on the Summit stage youth panel, Christopher Hohn didn\u2019t stop there. He and his brother Jacob led a late-night rally of dedicated advocates \u2013 including fellow youth panelist, Avery Garrison, NORD Chief Executive Pamela Gavin, and NORD Chief Strategy &amp; Operations Officer Kelly Esperias \u2013 to head outside to literally \u201csmash out MPS\u201d by smashing pumpkins together. It got loud, it got joyful, and thanks to our parent clean-up squad, D.C. streets were restored to their original sparkle. Advocacy with a pumpkin twist.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:279}\">\u00a0<\/span><\/p>\n<div style=\"width: 800px;\" class=\"wp-video\"><video class=\"wp-video-shortcode\" id=\"video-281735-4\" width=\"800\" height=\"450\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Smashing-Pumpkins.mp4?_=4\" \/><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Smashing-Pumpkins.mp4\">https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Smashing-Pumpkins.mp4<\/a><\/video><\/div>\n<p aria-level=\"3\"><b><span data-contrast=\"auto\">What Comes Next<\/span><\/b><br \/>\n<span data-contrast=\"none\">The 2025 NORD Breakthrough Summit may <\/span><span data-contrast=\"auto\">have ended, but our movement is every day. What makes this event so powerful isn\u2019t only the sessions and the speakers, but how many of you show up, year after year. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Showing up is the first step, and speaking up is the second. Change happens when our voices unite and we take the third, fourth, and more next steps together. Because until every rare disease has a treatment \u2014 or treatments \u2014 we are not slowing down. And we cannot do this alone. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Alone we are rare. Together we are strong. And together, we are driving progress.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span class=\"TextRun SCXW132170714 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW132170714 BCX0\" data-ccp-parastyle=\"No Spacing\">Here\u2019s<\/span><span class=\"NormalTextRun SCXW132170714 BCX0\" data-ccp-parastyle=\"No Spacing\"> how to keep showing up for the rare disease community:<\/span><\/span><span class=\"EOP SCXW132170714 BCX0\" data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Raise your voice: <\/span><\/b><span data-contrast=\"auto\">Save rare disease pediatric innovation and <\/span><a href=\"https:\/\/rarediseases.org\/driving-policy\/take-action\/#\/260\"><span data-contrast=\"none\">urge your legislators<\/span><\/a><span data-contrast=\"none\"> to reauthorize<\/span><span data-contrast=\"auto\"> the Rare Pediatric Disease Priority Review Voucher Program before the end of the year.\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"5\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Meet us in Milwaukee:<\/span><\/b><span data-contrast=\"auto\"> Get expert advice and make lasting connections to help you as you navigate life with a rare disease at the\u00a0<\/span><a href=\"https:\/\/livingrare.org\/\" rel=\"nofollow noopener\" target=\"_blank\"><span data-contrast=\"none\">Living Rare, Living Stronger<\/span><\/a><span data-contrast=\"auto\"> patient and family event in Milwaukee on Nov. 8. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"6\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Dive into rare science and rare solutions: <\/span><\/b><span data-contrast=\"auto\">Mark April 14-15, 2026, on your calendars for the second annual <a href=\"https:\/\/nordscience.org\/\" target=\"_blank\" rel=\"noopener nofollow\">NORD Rare Disease Scientific Symposium<\/a>, an opportunity for researchers, clinicians, industry leaders, and advocates to push boundaries and bridge gaps across the rare disease landscape.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281790\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Symposium-2026-Save-the-Date-1024x576.png\" alt=\"Save the Date for the next NORD Scientific Symposium, April 13-14, 2026 in Arlington, Virginia. Learn more at NORD science.org\" width=\"600\" height=\"338\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Symposium-2026-Save-the-Date-1024x576.png 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Symposium-2026-Save-the-Date-300x169.png 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Symposium-2026-Save-the-Date-768x432.png 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Symposium-2026-Save-the-Date.png 1280w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><\/p>\n<ul>\n<li style=\"font-size: 1.125rem; line-height: 1.5em;\" aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"7\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Return to D.C.: <\/span><\/b><span data-contrast=\"auto\">Save the date for next year\u2019s <\/span><a href=\"https:\/\/nordsummit.org\/\" rel=\"nofollow noopener\" target=\"_blank\"><span data-contrast=\"none\">Breakthrough Summit<\/span><\/a><span data-contrast=\"auto\">, Oct. 25-27, 2026, in Washington, D.C., so we can continue raising our voices and taking critical next steps together.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:720,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:360}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281791\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Summit-Save-the-Date-2026-1024x576.png\" alt=\"The 2026 NORD Breakthrough Summit will take place in Washington, D.C., October 25-27.\" width=\"600\" height=\"338\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Summit-Save-the-Date-2026-1024x576.png 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Summit-Save-the-Date-2026-300x169.png 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Summit-Save-the-Date-2026-768x432.png 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/Summit-Save-the-Date-2026.png 1440w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281748\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_3268-social-media-1024x683.jpg\" alt=\"Audience member asking a question at the NORD Breakthrough Summit\" width=\"800\" height=\"533\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_3268-social-media-1024x683.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_3268-social-media-300x200.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_3268-social-media-768x512.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_3268-social-media-1536x1024.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_3268-social-media-2048x1366.jpg 2048w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/p>\n<p><span data-contrast=\"none\">Your voice sparked something powerful. Let\u2019s keep raising it until <\/span><i><span data-contrast=\"none\">every <\/span><\/i><span data-contrast=\"none\">rare disease community sees the breakthroughs they deserve. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:240,&quot;335559739&quot;:240,&quot;335559740&quot;:279,&quot;335559991&quot;:0}\">Thank you for being part of our community. We also thank all of our 2025 Breakthrough Summit sponsors, including Platinum Sponsors <a href=\"https:\/\/www.sanofi.com\/en\" target=\"_blank\" rel=\"noopener nofollow\">Sanofi<\/a> and <a href=\"https:\/\/www.takeda.com\/\" target=\"_blank\" rel=\"noopener nofollow\">Takeda Pharmaceuticals<\/a> and Gold Sponsor <a href=\"https:\/\/travere.com\/\" target=\"_blank\" rel=\"noopener nofollow\">Travere Therapeutics<\/a>, for their generous support. <\/span><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-281750\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_4501-social-media-1024x683.jpg\" alt=\"Two attendees posing with NORDY the zebra at the NORD Breakthrough Summit\" width=\"800\" height=\"533\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_4501-social-media-1024x683.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_4501-social-media-300x200.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_4501-social-media-768x512.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_4501-social-media-1536x1024.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/MG_4501-social-media-2048x1366.jpg 2048w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The 2025 NORD\u00ae Rare Diseases &amp; Orphan Products Breakthrough Summit\u00ae was more than a gathering. It was a declaration. Well over 800 patient advocates, families, researchers, clinicians, and industry showed &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/2025-nord-breakthrough-summit\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;From Voices to Breakthroughs: Celebrating the 2025 NORD Breakthrough Summit&#8221;<\/span><\/a><\/p>\n","protected":false},"author":13,"featured_media":281751,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[503,190],"tags":[],"class_list":["post-281735","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-featured-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/281735","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=281735"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/281735\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/281751"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=281735"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=281735"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=281735"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}