5th Annual ECD Patient & Family Gathering New York, NY
New York Patient & Family Gathering Group Picture 2017
Patient & Family Gathering Summary
The 2017 Patient & Family Gathering (PFG) brought together 93 patients and family members from 6 countries. The patient/family community was joined by 65 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Fifteen 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 recursos para apoyar a la comunidad de ECD. Consulta la información que figura a continuación para obtener más detalles sobre las actividades y presentaciones del PFG, así como las fotografías de la conferencia.
Programas con orden del día de la reunión
Presentación
Se han añadido las siguientes presentaciones con la esperanza de que resulten de ayuda a los pacientes, las familias y los médicos interesados en obtener más información Acerca de ECD. La ECDGA agradece los esfuerzos y las contribuciones de la comunidad médica para mejorar la atención a los pacientes con ECD.
| Presentador | Slides |
|---|---|
| Craig Blinderman, MD, MA, FAAHPM | Pain management in Erdheim-Chester Disease |
| Eli L. Diamond, MD | ECD and the Brain Slides coming soon |
| Mary Elizabeth Davis, RN, MSN, AOCNS and Allison Hyde, RN, BSN | Demystifying the Clinical Trial See also printable ECD Studies & Trials Guide |
| Ronald Go, doctor en Medicina | ECD Treatment Options |
| Mark Heaney, MD | An Overview of ECD |
| Filip Janku, MD, PhD | ECD and Clinical Trials See also printable ECD Studies & Trials Guide |
| Meenal Kheterpal, MD | Skin Care Pearls ECD Management |
| Andy J. Roth, MD | Psychological Effects on the Chronically Ill and Their Families |
| Buster Brewer, Jessica Corkran, Kathy Brewer | ECDGA: Cierre |
Fotografías
Reception Photos
The following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on October 26, 2017 in New York, NY. Thank you to all participants for attending and engaging with the community. Please join us again on November 15, 2018 in Orlando!
Patient Meeting Photos
The following photos were taken during the ECD Patient & Family Gathering meeting on October 27, 2017 in New York, NY. Thank you to all attendees for participating during the meeting and social times, allowing for great support and connections within this community. Please join us again on November 15, 2018 in Orlando!
