2nd Annual ECD Patient & Family Gathering Bethesda, MD
Bethesda Patient & Family Gathering Group Picture 2014
Patient & Family Gathering Summary
The 2014 Patient & Family Gathering (PFG) brought together approximately 94 patients and family members from 13 countries. The patient/family community was joined by 53 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Twenty-five 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 | Video (no videos made during this meeting) |
|---|---|---|
| William Gahl, MD, PhD | Rare Diseases and the National Institutes of Hope | |
| Mark Heaney, MD, PhD (chair) Lorenzo Dagna, MD Eli Diamond, MD Julien Haroche, MD, PhD Augusto Vaglio, MD | ECD Treatment Panel | |
| Juvianee Estrada-Veras, MD (chair) Giulio Cavalli, MD Mark Heaney, MD, PhD Julien Haroche, MD, PhD Peter Hillman, MD | Current ECD Studies / Research Panel | |
| Augusto Vaglio, MD, PhD (chair) Lorenzo Dagna, MD Eli Diamond, MD Juvianee Estrada-Veras, MD Peter Hillman, MD David Hyman, MD Andrew Talbot, MD | Q&A Panel | |
| Ann Berger, MD | Integrative Pain Management | |
| Ann T. Acevedo, MD | Exercise in Erdheim-Chester Disease | |
| Zavera Brandon, MPT, DPT | Focus on Function: Role of Physical Therapy | |
| Terri D. Nguyen, MOT, OTR-C | Focus on Function: The Role of Occupational Therapy | |
| E. Caroline Mason & Diana Varela | Understanding the Social Security Disability Program | |
| Pamela Gardner, DMD | Oral Manifestations of ECD | |
| Ann Berger, MD | Caring for the Caregiver | |
| Melissa Merideth, MD, MPH | Obstetrics and Gynecologic Health in Patients with ECD | |
| Susan Robertson, PhD | The Social Security Application: Tips & Strategies | |
| Ann Berger, MD | Awakening the Spiritual Dimension of Oneself | |
| Kathy Brewer | The Business of Creating Hope – With You | |
| Eli Diamond, MD | Patient Stories | |
| Danetta Sloan, PhD | Caregiving in the World of ECD | |
| Karla D. Toledo-Frazzini, MD | Family and Community Medicine | |
| Megan Wright, RD | Nutrition & Erdheim-Chester Disease | |
| Kevin O’Brien, RN, MS-CRNP | Ideas to Take Back to Your Medical Team | |
| ECDGA Team | Get Involved to Create Hope |
Photographs
