{"id":41686,"date":"2025-05-26T17:16:49","date_gmt":"2025-05-26T22:16:49","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?post_type=tribe_events&p=41686"},"modified":"2025-11-18T22:40:28","modified_gmt":"2025-11-19T04:40:28","slug":"10th-annual-ecd-patient-family-gathering","status":"publish","type":"tribe_events","link":"https:\/\/www.erdheim-chester.org\/zh\/event\/10th-annual-ecd-patient-family-gathering\/","title":{"rendered":"\u7b2c\u5341\u5c4aECD\u60a3\u8005\u53ca\u5bb6\u5c5e\u8054\u8c0a\u4f1a"},"content":{"rendered":"

Register Here<\/a><\/span><\/p>\n

Part of the ECD Global Alliance\u2019s 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.<\/p>\n

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The 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.<\/p>\n

Register Here<\/a><\/span><\/p>\n

\u6982\u8ff0<\/h3>\n

The 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.<\/p>\n

On-site simultaneous interpreters will enable participation for English, French, German, Italian, and Spanish speakers.<\/strong><\/p>\n

Schedule of Events<\/h3>\n

Sunday, May 25, 2025 \u2013 Pre-Meeting Activity<\/u><\/strong><\/p>\n

5 \u2013 6 pm Catholic Mass<\/strong>
\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.<\/p>\n

Monday, May 26, 2025<\/strong><\/p>\n

8:00 am-8:30 am Registration & Continental Breakfast<\/strong>
\nEnjoy a light breakfast with others and prepare for an informational day full of hope.<\/p>\n

8:30 am-4:40 pm Patient & Family Gathering<\/strong>
\nSpend the day learning more about ECD from medical professionals, patients, and others.<\/p>\n

6:00 pm-8:00 pm Celebration Evening<\/strong>
\nSpend time with patients, family members, friends, and medical professionals for an evening of hope and celebration.<\/p>\n

Who attends?<\/h3>\n

The 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.<\/p>\n

Register Here<\/a><\/span><\/p>\n

Host<\/h3>\n

\"\"<\/a>Xavier Solanich, MD, PhD<\/a> is this year\u2019s 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…<\/p>\n

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.<\/p>\n

\u8bae\u7a0b<\/h3>\n

A detailed agenda will be available before the conference.<\/p>\n

Hotel<\/h3>\n

A room block has been set up for the Patient & Family Gathering at \u2013<\/p>\n

The Renaissance Barcelona Fira Hotel<\/a>
\nPlaza Europa, 50-52, L’Hospitalet de Llobregat,
\nBarcelona, Spain, 08902<\/p>\n

Please make your reservations using the link below before the hotel deadline.<\/p>\n

Book your group rate for ECD Global Alliance Conference<\/strong><\/a><\/p>\n

Group Room Rate:<\/strong> Single: 240 Euro\/night; Double: 260 Euro\/night
\nHotel reservation deadline:<\/strong> April 21, 2025<\/p>\n

Travel<\/h3>\n

Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include:<\/p>\n