{"id":94595,"date":"2025-09-11T08:29:59","date_gmt":"2025-09-11T13:29:59","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=94595"},"modified":"2025-09-11T17:02:16","modified_gmt":"2025-09-11T22:02:16","slug":"experience-the-erdheim-chester-disease-2025-gathering-now-on-demand","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/pt\/experience-the-erdheim-chester-disease-2025-gathering-now-on-demand\/","title":{"rendered":"Viva a experi\u00eancia do Encontro sobre a Doen\u00e7a de Erdheim-Chester 2025 \u2014 Agora dispon\u00edvel sob demanda"},"content":{"rendered":"<p class=\"p1\"><span class=\"s1\">The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to share that <\/span><b>every session from our 2025 Patient &amp; Family Gathering and Medical Symposium\u2014held May 26\u201327 in vibrant Barcelona\u2014is now available to watch online.<\/b><b><\/b><\/p>\n<p class=\"p3\">Whether you joined us in person or are tuning in from around the world, these full-day video collections bring the same knowledge, hope, and connection straight to your screen.<\/p>\n<p>&nbsp;<\/p>\n<h3><b>Day 1: Patient &amp; Family Gathering \u2013 A Day of Knowledge and Community<\/b><\/h3>\n<p class=\"p3\">On May 26, patients, families, and experts came together at Bellvitge University Hospital for a day packed with learning and encouragement. The program featured:<\/p>\n<ul>\n<li>\n<p class=\"p1\"><span class=\"s1\"><b>Cutting-Edge Science:<\/b><\/span> Updates on the biology of Erdheim-Chester Disease, current research breakthroughs, and the latest treatment options\u2014from targeted therapies to emerging clinical trials.<\/p>\n<\/li>\n<li>\n<p class=\"p1\"><span class=\"s1\"><b>Living with ECD:<\/b><\/span> Deep dives into clinical manifestations, brain\/eye and kidney involvement, and strategies to manage side effects.<\/p>\n<\/li>\n<li>\n<p class=\"p1\"><span class=\"s1\"><b>Whole-Person Care:<\/b><\/span> Sessions on mental and emotional health, pain and fatigue management, staying active, and eating well, all capped by expert Q&amp;A panels.<\/p>\n<\/li>\n<\/ul>\n<p class=\"p3\">To ensure global accessibility, <span class=\"s3\"><b>this entire day has been translated into French, Italian, Spanish, and German<\/b><\/span>, with a dedicated playlist for each language:<\/p>\n<ul>\n<li>\n<p class=\"p1\"><a href=\"https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc4GfigO8mJrw6rtGHvGj9wi\" target=\"_blank\" rel=\"noopener\">French Playlist \u2013 Watch Here<\/a><\/p>\n<\/li>\n<li>\n<p class=\"p1\"><a href=\"https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc5XI6vrpQbiHo2eZmClrBuf\" target=\"_blank\" rel=\"noopener\">Italian Playlist \u2013 Watch Here<\/a><\/p>\n<\/li>\n<li>\n<p class=\"p1\"><a href=\"https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc7y82n4XnkXWNXg57w8TFj6\" target=\"_blank\" rel=\"noopener\">Spanish Playlist \u2013 Watch Here<\/a><\/p>\n<\/li>\n<li>\n<p class=\"p1\"><a href=\"https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc7xwWCZ7Iw05Hb8ZckDpjV2\" target=\"_blank\" rel=\"noopener\">German Playlist \u2013 Watch Here<\/a><\/p>\n<\/li>\n<li><a href=\"https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc57Hots4EuW9Q6nff5yh5_z\" target=\"_blank\" rel=\"noopener\">English Playlist &#8211; Watch Here<\/a><\/li>\n<\/ul>\n<h3><b>Day 2: Medical Symposium \u2013 Advancing Research and Care<\/b><\/h3>\n<p class=\"p3\">On May 27, leading clinicians and researchers gathered for a focused Medical Symposium, sharing the most up-to-date insights into ECD biology, treatment innovation, and clinical best practices.<\/p>\n<p class=\"p3\">This content is available in English:<\/p>\n<ul>\n<li>\n<p class=\"p1\"><a href=\"https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc5tBxKVSA9-3MLe2pmvk6VI\" target=\"_blank\" rel=\"noopener\">Medical Symposium Playlist \u2013 Watch Here<\/a><\/p>\n<\/li>\n<\/ul>\n<h3><b>Why Watch?<\/b><\/h3>\n<p>These recordings capture the full spirit of the Barcelona event\u2014a unique chance to learn directly from global experts and hear firsthand stories from the ECD community. Whether you\u2019re a patient, caregiver, or healthcare professional, these sessions offer practical guidance, the latest scientific developments, and an enduring sense of hope.<\/p>\n<p><b>Join us on this journey of understanding and connection.<\/b><b><\/b><\/p>\n<p>Click the links above to explore the videos and share them with friends, family, and your medical team. Together, we continue to push forward\u2014toward better treatments, stronger community support, and brighter days ahead.<\/p>\n<p><em>A Alian\u00e7a Global para a Doen\u00e7a de Erdheim-Chester (ECDGA) n\u00e3o oferece orienta\u00e7\u00e3o m\u00e9dica, diagn\u00f3sticos ou\u00a0<a href=\"https:\/\/www.erdheim-chester.org\/pt\/tratamentos-3\/\">tratamentos<\/a>. Todo o conte\u00fado tem car\u00e1ter meramente informativo. Em caso de d\u00favidas m\u00e9dicas, consulte um profissional de sa\u00fade.<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to share that every session from our 2025 Patient &amp; Family Gathering and Medical Symposium\u2014held May 26\u201327 in vibrant Barcelona\u2014is now available [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":95056,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[2397,4692,387,374,4691,2261,4693,4258,2398,2395,4694,2491,4690,3844,2881],"class_list":["post-94595","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-barcelona2025","tag-chronicillnesscommunity","tag-ecdga","tag-erdheimchesterdisease","tag-familycaregivers","tag-globalhealth","tag-hopeforpatients","tag-medicalinnovation","tag-medicalresearch","tag-medicalsymposium","tag-ondemandvideos","tag-patientfamilygathering","tag-patientsupport","tag-rarediseaseawareness","tag-rarediseasecommunity"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/94595","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/comments?post=94595"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/94595\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media\/95056"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media?parent=94595"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/categories?post=94595"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/tags?post=94595"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}