2nd Annual ECD Patient & Family Gathering Bethesda, MD
Bethesda Patient & Family Gathering Group Picture 2014
Resumo do Encontro com Pacientes e Familiares
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 recursos para apoiar a comunidade de ECD. Consulte as informações abaixo para saber mais sobre as atividades e apresentações do PFG, bem como ver fotos da conferência.
Programas com agenda do encontro
Apresentação
| Apresentador | Slides da apresentação | Video (no vídeos made during this meeting) |
|---|---|---|
| William Gahl, MD, PhD | Rare Diseases and the National Institutes of Hope | |
| Mark Heaney, MD, PhD (chair) Lorenzo Dagna, MD Dr. Eli Diamond Julien Haroche, Médico, Doutor Augusto Vaglio, MD | ECD Treatment Panel | |
| Juvianee Estrada-Veras, MD (chair) Dr. Giulio Cavalli Mark Heaney, MD, PhD Julien Haroche, Médico, Doutor Peter Hillman, MD | Current ECD Studies / Research Panel | |
| Augusto Vaglio, MD, PhD (chair) Lorenzo Dagna, MD Dr. Eli Diamond 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 | |
| Dr. Eli Diamond | Histórias de pacientes | |
| 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 |
Fotografias
