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 bronnen om de ECD-gemeenschap te ondersteunen. Zie de onderstaande informatie voor meer details over de activiteiten en presentaties van de PFG, evenals foto’s van de conferentie.
Programma's met een bijeenkomstagenda
Presentatie
The following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more over ECD. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients.
| Presentator | Dia’s |
|---|---|
| Craig Blinderman, MD, MA, FAAHPM | Pijnbestrijding bij de ziekte van Erdheim-Chester |
| Eli L. Diamond, arts | ECD en de hersenen – dia’s volgen binnenkort |
| Mary Elizabeth Davis, RN, MSN, AOCNS en Allison Hyde, RN, BSN | Klinische proeven ontrafeld Zie ook: afdrukbare versie Gids voor ECD-onderzoeken en -proeven |
| Ronald Go, arts | Behandelingsmogelijkheden voor ECD |
| Mark Heaney, arts | Een overzicht van ECD |
| Filip Janku, arts, dr. | ECD en klinische proeven Zie ook: afdrukbare versie Gids voor ECD-onderzoeken en -proeven |
| Meenal Kheterpal, arts | Tips voor huidverzorging – ECD-management |
| Andy J. Roth, arts | Psychologische gevolgen voor chronisch zieken en hun gezinnen |
| Buster Brewer, Jessica Corkran, Kathy Brewer | ECDGA Sluiten |
Foto's
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 doe mee 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 doe mee again on November 15, 2018 in Orlando!
