As you prepare to attend the 10th Annual Patient and Family Gathering hosted by the Erdheim-Chester Disease Global Alliance (ECDGA), we want to ensure you have all the practical information and context you need to feel confident and supported from the moment you arrive in Barcelona. This gathering is about more than just information\u2014it\u2019s about community, empowerment, and shared hope. From logistics to lodging to the day\u2019s structure, here is what you can expect.<\/p>\n
The primary lodging site for many attendees is the Renaissance Barcelona Fira Hotel<\/strong>, which will serve as the informal home base for ECDGA\u2019s events throughout the week. On the morning of Monday, May 26<\/strong>, volunteers will be available in the hotel lobby from 7:00 to 7:45 AM<\/strong> to help escort attendees via Metro to the conference site at Bellvitge University Hospital<\/strong>. The journey is straightforward and takes approximately 10 minutes<\/strong>. For those who may have mobility considerations or prefer more direct transportation, taxis and rideshare services<\/strong> are readily available and encouraged.<\/p>\n If this is your first time navigating Barcelona\u2019s transit, you\u2019ll be supported. Volunteers are there to walk alongside you and answer questions along the way. Please don\u2019t hesitate to ask for assistance\u2014we are here to make sure your experience is smooth and stress-free.<\/p>\n \u03a4\u03bf Patient & Family Gathering<\/strong> will take place in the Main Building<\/strong> of Bellvitge University Hospital, on the Street Level in the Auditorium<\/strong>. Registration and a light breakfast will begin at 8:00 AM<\/strong>, and the program will run from 8:30 AM to 4:30 PM<\/strong>. Bellvitge is one of Spain\u2019s leading institutions for rare diseases and is home to a designated ECD Care Center. Its team, led by Dr. Xavier Solanich, has played a pivotal role in the planning of the event and increasing histio knowledge in the Spanish community.<\/p>\n After the full day of sessions and conversation, all attendees are invited to the\u00a0ECD Global Alliance Celebration Dinner<\/b>\u00a0at the\u00a0\u0391\u03af\u03b8\u03bf\u03c5\u03c3\u03b1 \u00ab\u03a6\u03b9\u03c1\u03ac\u00bb<\/b>, located on the -1 floor of the Renaissance Barcelona Fira. From 6:00 to 8:00 PM<\/strong>, we will gather to reflect on the day\u2019s insights, strengthen friendships, and celebrate the community we continue to build together. It\u2019s an evening filled with encouragement and connection,\u00a0whether this is your first Gathering or your tenth.<\/p>\n Whether you’re traveling solo or with loved ones, we want you to know you\u2019re not alone. The ECDGA community is ready to welcome you with compassion and care. If you have questions about mobility access, dietary needs, or navigating the hospital, event volunteers and staff are prepared to assist. Your comfort and safety are our priority.<\/p>\n The Patient and Family Gathering is not just an educational event\u2014it\u2019s a cornerstone of the ECDGA\u2019s mission to unite individuals impacted by Erdheim-Chester Disease. This is where stories are shared, where complex medical topics become clearer, and where those living with ECD can hear directly from international experts. Equally important, it\u2019s where lifelong friendships often begin.<\/p>\n We recognize that travel, new environments, and rare disease can all bring uncertainty. But know that you will be surrounded by people who understand, who care, and who are committed to walking this journey with you. Together, we are building not just knowledge, but also hope.<\/p>\n Please keep checking the ECDGA website for updates and final details. And if you need help before or during the event, reach out. We look forward to seeing you in Barcelona.<\/p>","protected":false},"excerpt":{"rendered":" As you prepare to attend the 10th Annual Patient and Family Gathering hosted by the Erdheim-Chester Disease Global Alliance (ECDGA), we want to ensure you have all the practical information […]<\/p>\n","protected":false},"author":14,"featured_media":53511,"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":[594,375,378,387,380,383,374,384,386,376,385],"class_list":["post-53450","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-barcelona","tag-ecdawareness","tag-ecdcommunity","tag-ecdga","tag-ecdsupport","tag-ecdvolunteer","tag-erdheimchesterdisease","tag-hopeforecd","tag-makerarevisible","tag-raredisease","tag-supportraredisease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/53450","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=53450"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/53450\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/53511"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=53450"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=53450"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=53450"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Event Location: Bellvitge University Hospital<\/h3>\n
Evening Celebration Dinner<\/h3>\n
Accessibility and Support<\/h3>\n
Why This Gathering Matters<\/h3>\n