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X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance
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DTSTART;TZID=America/Chicago:20250526T070000
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DTSTAMP:20260604T023359
CREATED:20250115T231711Z
LAST-MODIFIED:20251119T043711Z
UID:10000014-1748242800-1748426400@www.erdheim-chester.org
SUMMARY:10th Annual ECD Medical Symposium
DESCRIPTION:Register Here \nMedical professionals from around the world will gather in Barcelona May 26-28 to share scientific findings\, patient outcomes\, and case studies related to Erdheim-Chester Disease. We welcome you to join your professional colleagues to share and learn about new findings related to the science of ECD\, the diagnostic details\, and the care of those living with ECD. This is the only meeting where medical specialists from different fields join together to discuss ECD. We look forward to you joining in the discussions and hope you might find opportunities for collaboration. \n \nAbstract Submissions Abstracts related to ECD and/or adult histiocytosis are being solicited for presentation at the Medical Symposium.  Abstracts are being accepted for oral and/or poster presentation.  This is a great opportunity to share your work and the work of your colleagues.  Please let them know of the opportunity.  Abstracts must be submitted no later than February 24\, 2025. \nSubmit Abstract \nSchedule of Events Sunday\, May 25\, 2025 – Pre-Meeting Activity \n5 – 6 pm Catholic Mass Anyone interested is invited to a Catholic Mass before the beginning of the conference. Father Charles Balnaves\, the sponsor of the Patient & Family Gathering\, will celebrate the Mass. \nMonday\, May 26\, 2025 – Patient & Family Gathering. \n8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am – 4:30 pm Patient & Family Gathering Spend the day learning more about ECD from medical professionals\, patients\, and others. \n6 – 8 pm Celebration Evening Spend time with patients\, family members\, friends\, and medical professionals for an evening of hope and celebration. \nTuesday\, May 27\, 2025 – Medical Symposium. \n8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am – 4:30 pm Medical Symposium Spend the day learning more about ECD from other investigators and clinicians. Discover possible future collaboration opportunities. \n6:30 – 8:30 pm Medical Reception Spend time relaxing and meeting with friends. \nWednesday\, May 28\, 2025 – Care Center Meeting. 8 – 11 am Care Center Meeting Discuss patient care and opportunities to work together to improve patient outcomes. Who attends? The event is open to the entire ECD community of medical professionals. Please feel free to invite your colleagues. \nRegister Here \nHost Xavier Solanich\, MD\, PhD is this year’s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients\, he attends to patients with other rare diseases such as Rosai-Dorfman\, primary immunodeficiencies\, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases\, mainly systemic vasculitis\, periaortitis / retroperitoneal fibrosis\, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis\, immune / ischemic optic neuritis\, and orbital pseudotumor. Dr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases\, immunodeficiencies\, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator\, obtaining competitive public funding. As a result of his research\, he is the author of several articles published in indexed scientific journals. \nAgenda \nA detailed agenda will be available before the conference. Hotel A room block has been set up for the Patient & Family Gathering at – The Renaissance Barcelona Fira Hotel Plaza Europa\, 50-52\, L’Hospitalet de Llobregat\, Barcelona\, Spain\, 08902 Please make your reservations using the link below before the hotel deadline. Book your group rate for the ECD Global Alliance Conference Group Room Rate: Single: 240 Euro/night; Double: 260 Euro/night Hotel reservation deadline: April 21\, 2025 \nTravel Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include: \n\nSubway. Metro line L9 Sud connects the airport terminals T1 and T2 with the Renaissance Barcelona Fira Hotel. The hotel metro station is Europa Fira. The metro operates daily between 5 am and midnight.\nPrivate Transfer. The hotel website states that private transfer is available for 101 Eur (one way) on request.\n\nScholarship Help \nWe have a limited number of scholarships available if a member of the ECD medical professional community would be unable to attend due to financial reasons. If a scholarship is needed\, please contact the ECDGA at support@Erdheim-Chester.org as early as possible. You will need to include your name\, email address\, position in the community (clinician\, specialist\, scientist\, student\, etc.)\, and a statement of your need. We will let everyone know what help we can provide by the end of February. \nAwareness Nomination Opportunity \nYou are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. Submit a Mark Heaney Award nomination to honor the medical professional you believe has improved the lives of ECD patients by bringing awareness to ECD within the medical profession. Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.)who has volunteered their time to help improve the lives of all of those impacted by ECD. The award recipient will be announced at the ECD Celebration Evening on May 26. \nAttendee Experiences \n“ECDGA is doing a phenomenal job. Thank you team ECDGA for all that you do to improve patient care.” \n– Radiologist \n“It is my first ECDGA meeting and I really enjoyed it.” \n– Basic Scientist \n“This is the first time to attend an ECD meeting. This is a very amazing event which will definitely change my practice and attitude.” \n– Hematologist
URL:https://www.erdheim-chester.org/event/10th-annual-ecd-medical-symposium/
LOCATION:The Renaissance Barcelona Fira Hotel\, Plaza Europa\, 50-52\, L'Hospitalet de Llobregat\, Barcelona\, 08902\, Spain
CATEGORIES:ECD Medical Symposium
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/01/skyline-barcelona-ms.jpg
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DTSTART;TZID=America/Chicago:20250526T070000
DTEND;TZID=America/Chicago:20250526T190000
DTSTAMP:20260604T023400
CREATED:20250526T221649Z
LAST-MODIFIED:20251119T044028Z
UID:10000013-1748242800-1748286000@www.erdheim-chester.org
SUMMARY:10th Annual ECD Patient & Family Gathering
DESCRIPTION:Register Here \nPart of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of a Patient and Family Gathering (PFG) is to unite patients and family members\, as well as increase their knowledge and understanding of Erdheim-Chester disease. \n \nThe PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field. The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options\, as well as hear about the latest research findings. \nRegister Here \nOverview\nThe ECD Global Alliance 2025 Patient & Family Gathering will take place at the Renaissance Barcelona Fira Hotel on May 26. This meeting will bring together patients\, family members\, carers\, clinicians\, researchers\, and members of support organizations to share knowledge and experiences related to ECD diagnosis\, treatment\, daily living. There will be time for learning\, time for sharing\, and time for connecting with others who have been affected by ECD. We hope it will be a time for all to become better informed and find increased hope for the future. \nOn-site simultaneous interpreters will enable participation for English\, French\, German\, Italian\, and Spanish speakers. \nSchedule of Events\nSunday\, May 25\, 2025 – Pre-Meeting Activity \n5 – 6 pm Catholic Mass\nAnyone interested is invited to a Catholic Mass before the beginning of the conference. Father Charles Balnaves\, the sponsor of the Patient & Family Gathering\, will celebrate the Mass. \nMonday\, May 26\, 2025 \n8:00 am-8:30 am Registration & Continental Breakfast\nEnjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am-4:40 pm Patient & Family Gathering\nSpend the day learning more about ECD from medical professionals\, patients\, and others. \n6:00 pm-8:00 pm Celebration Evening\nSpend time with patients\, family members\, friends\, and medical professionals for an evening of hope and celebration. \nWho attends?\nThe event is open to the entire ECD community of patients\, carers\, family members\, and ECD medical professionals. Please feel free to invite your family\, friends\, and members of your medical team. \nRegister Here \nHost\nXavier Solanich\, MD\, PhD is this year’s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients\, he attends to patients with other rare diseases such as Rosai-Dorfman\, primary immunodeficiencies\, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases\, mainly systemic vasculitis\, periaortitis / retroperitoneal fibrosis\, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis\, immune / ischemic optic neuritis\, and orbital pseudotumor… \nDr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases\, immunodeficiencies\, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator\, obtaining competitive public funding. As a result of his research\, he is the author of several articles published in indexed scientific journals. \nAgenda\nA detailed agenda will be available before the conference. \nHotel\nA room block has been set up for the Patient & Family Gathering at – \nThe Renaissance Barcelona Fira Hotel\nPlaza Europa\, 50-52\, L’Hospitalet de Llobregat\,\nBarcelona\, Spain\, 08902 \nPlease make your reservations using the link below before the hotel deadline. \nBook your group rate for ECD Global Alliance Conference \nGroup Room Rate: Single: 240 Euro/night; Double: 260 Euro/night\nHotel reservation deadline: April 21\, 2025 \nTravel\nBarcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include: \n\nSubway. Metro line L9 Sud connects the airport terminals T1 and T2 with the Renaissance Barcelona Fira Hotel. The hotel metro station is Europa Fira. The metro operates daily between 5 am and midnight.\nPrivate Transfer. The hotel website states that private transfer is available for 101 Euro (one way) on request.\n\nScholarship Help\nWe have a limited number of scholarships available if a patient/family member would be unable to attend due to financial reasons. If a scholarship is needed\, please contact the ECDGA at support@Erdheim-Chester.org as early as possible. You will need to include your name\, email address\, position in the community (patient\, caregiver\, family member)\, and a statement of your need. We will let everyone know what help we can provide by the end of February. \nAwareness Nomination Opportunity\nYou are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. Submit a Mark Heaney Award nomination to honor the medical professional you believe has improved the lives of ECD patients by bringing awareness to ECD within the medical profession. Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.)who has volunteered their time to help improve the lives of all of those impacted by ECD. The award recipient will be announced at the ECD Celebration Evening on May 26. \nAttendee Experiences \n“We are all in the same boat\, and our journey will be better together.” \n– Susan Anderson\, ECD Family \n“I have been in health care for over 20 years and have never seen or experienced such a caring and devoted group of health care professionals and volunteers!” \n– ECD Patient in Attendance \n“I know they can’t give me a cure\, or even answer all of my questions\, but just knowing they are here for me\, and they are listening\, and they understand what I’m going through\, that’s what I needed.” \n– ECD Patient in Attendance
URL:https://www.erdheim-chester.org/event/10th-annual-ecd-patient-family-gathering/
LOCATION:The Renaissance Barcelona Fira Hotel\, Plaza Europa\, 50-52\, L'Hospitalet de Llobregat\, Barcelona\, 08902\, Spain
CATEGORIES:ECD Patient & Family Gathering
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/01/skyline-barcelona-pfg.jpg
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