1st Annual ECD Patient & Family Gathering San Diego, CA
San Diego Patient & Family Gathering Group Picture 2013
Resumen de la reunión con pacientes y familiares
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 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
| Presentador | 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 |
| Alianza Global ECD | 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 |
Fotografías
