1st Annual ECD Patient & Family Gathering San Diego, CA
San Diego Patient & Family Gathering Group Picture 2013
Patient & Family Gathering Summary
The first 2013 Patient & Family Gathering (PFG) brought together approximately 54 patients and family members. This conference was not co-hosted by any medical institution and was born of a ‘If we build it, they will come” belief. The timing was right, and interested parties came, beginning a movement of collaboration among scientists, clinicians, patients, family members, and advocates that remains strong today. Attendees came from eight countries
The patient/family community was joined by 32 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Thirteen 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.
Presentation
| Presenter | Presentation Slides (no slide decks available) | Presentation Video |
|---|---|---|
| Timothy Vollmer, MD | Role of diet and exercise in neurologic disease | Role of diet and exercise in neurologic disease |
| Lorenzo Dagna, MD (chair) Achille Aouba, MD Mark Heaney, MD, PhD David Hyman, MD | ECD Treatment Options – Panel Discussion | ECD Treatment Options – Panel Discussion |
| Juvianee Estrada-Veras, MD (chair) Omar Abdel-Wahab, MD Lorenzo Dagna, MD Augusto Vaglio, MD | Current ECD Studies/ Research – Panel Discussion | Not available |
| Omar Abdel-Wahab, MD | Round table discussion with all Medical Professionals in attendance | Not available |
| Caroline Bjonback, MD | Alternative Medicine as Adjuncts to Traditional Medicine | Not available |
| Ana Acevedo, MD | Physical Therapy and ECD | Not available |
| Allan Goldstein Cassondra Graff, MS, LCSW | Mindfulness Techniques | Mindfulness Techniques |
| Cindy Livings, RN | Communicating With Medical Professionals & Keeping Medical Records | Communicating With Medical Professionals & Keeping Medical Records |
| ECD Global Alliance | Organizational Overview and Direction Setting | Not available |
| Ted File | Enjoying San Diego | Not available |
| Gadi Bauchman | ECD – A Personal Account | Not available |
| All in attendance | Patient Round Table Discussions | Not available |
| Gordon Saxe, MD | 5 Pillars of a Healthy Diet | Not available |
Photographs
