4° Incontro annuale dei pazienti e delle famiglie dell’ECD, Parigi, Francia
Paris International ECD Patient & Family Gathering Group Picture 2016
Sintesi dell'incontro con i pazienti e le famiglie
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 resources to aid the ECD community. Please see the information below for more on the PFG activities and presentations, as well as pictures from the conference.
Programmi con ordine del giorno dell'incontro
Presentazione
The following presentations were included in the 2016 Patient & Family Gathering agenda in Paris, France. Visit the Canale YouTube di ECD Global Alliance per tutti i contenuti pubblicati relativi all’ECD video.
| Presentatore | Diapositive della presentazione | Video di presentazione |
|---|---|---|
| Dott. Julien Haroche | N/A | Benvenuti |
| Stéphane Barete, MD | ECD Skin Issues | ECD Skin Issues |
| Dott. Giulio Cavalli | ECD Lung & Heart Issues | ECD Lung & Heart Issues |
| Dott.ssa Carine Courtillot | Endocrinological Consequences of ECD | Endocrinological Consequences of ECD |
| Dott. Eli Diamond (Presented by Juvianee Estrada-Veras, MD) | ECD Neurological Issues | ECD Neurological Issues |
| Dott. Benjamin Durham | 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, dottore in medicina, dottore di ricerca | L'importanza delle sperimentazioni cliniche | See ECD Studies & Trials Panel |
| Kenneth L. McClain, dottore in medicina, dottore di ricerca | ECD Studies & Trials – Texas Children’s Cancer Center | See ECD Studies & Trials Panel |
| Augusto Vaglio, dottore in medicina e dottore di ricerca | 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 |
Fotografie
