第四屆年度 ECD 患者與家屬聚會，法國巴黎
2016 年巴黎國際 ECD 病友與家屬聚會團體合照
病友與家屬聚會摘要
2016 年病友與家屬聚會 (PFG) 匯集了來自 17 個國家的 63 名病友與家屬。此外，還有 64 名對病友照護充滿熱忱並致力於深入研究 Erdheim-Chester 的臨床醫生與科學家共同參與。共有 14 名臨床醫生/科學家針對 ECD 及其支援需求發表了演說。所有與會者一同享用了慶祝晚宴，藉此機會進行交流，並表彰投入時間與資源協助 ECD 社群的領袖。請參閱下方資訊，瞭解更多關於 PFG 活動與簡報的內容，以及會議照片。
含聚會議程的計畫
簡報
以下簡報已列入於法國巴黎舉行的 2016 年病友與家屬聚會議程。請造訪 ECD Global Alliance YouTube 頻道以觀看所有已發佈的 ECD 相關影片。
| Presenter | Presentation Slides | Presentation Video |
|---|---|---|
| Julien Haroche, MD | N/A | Welcome |
| Stéphane Barete, MD | ECD Skin Issues | ECD Skin Issues |
| Giulio Cavalli, MD | ECD Lung & Heart Issues | ECD Lung & Heart Issues |
| Carine Courtillot, MD | Endocrinological Consequences of ECD | Endocrinological Consequences of ECD |
| Eli Diamond, MD (Presented by Juvianee Estrada-Veras, MD) | ECD Neurological Issues | ECD Neurological Issues |
| Benjamin Durham, MD | ECD Studies at MSKCC | See ECD Studies & Trials Panel |
| Philippe A. Grenier, MD | CT of Thoracoabdominal Involvement in Erdheim-Chester Disease | See ECD Scan and Radiology Panel. |
| Filip Janku, MD, PhD | Importance of Clinical Trials | See ECD Studies & Trials Panel |
| Kenneth L. McClain, MD, PhD | ECD Studies & Trials – Texas Children’s Cancer Center | See ECD Studies & Trials Panel |
| Augusto Vaglio, MD, PhD | Renal & Ureteral Involvement in ECD | Renal & Ureteral Involvement in ECD |
| Panel participants:Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD, Julien Haroche, MD, PhD, Filip Janku, MD, PhD, Kenneth McClain, MD PhD, Augusto Vaglio, MD, PhD | ECD Studies & Trials Panel | ECD Studies & Trials Panel |
| Panel participants:Marcus Chen, MD, Phillippe Cluzel, MD PhD, Phillippe Grenier, MD, Phillippe Maksund, MD | ECD Scan and Radiology Panel | ECD Scan and Radiology Panel |
| Physician panelists answer patient questions regarding Erdheim-Chester Disease. | Doctor Question & Answer Panel | Doctor Question & Answer Panel |
照片
