המפגש השנתי הרביעי של ECD לחולים ובני משפחותיהם, פריז, צרפת
Paris International ECD Patient & Family Gathering Group Picture 2016
Patient & Family Gathering Summary
The 2016 Patient & Family Gathering (PFG) brought together 63 patients and family members from 17 countries. The patient/family community was joined by 64 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Fourteen clinicians/scientists provided talks on ECD and ECD support needs. A Celebration Dinner with all attendees was enjoyed, allowing time for fellowship and recognition of community leaders who dedicate their time and משאבים כדי לסייע לקהילת ה-ECD. אנא עיינו במידע שלהלן לקבלת פרטים נוספים על פעילויות ה-PFG והמצגות, וכן תמונות מהכנס.
תוכניות הכוללות סדר יום למפגש
מצגת
The following presentations were included in the 2016 Patient & Family Gathering agenda in Paris, France. Visit the ECD Global Alliance YouTube channel for all published ECD related videos.
| מנחה | שקופיות מצגת | 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 |
תמונות
