4º Encontro Internacional de Pacientes e Familiares de ECD Paris, França

Localização: Paris, França

Um total de 63 pacientes e familiares, além de vários médicos, de 17 países diferentes participaram do Encontro de Pacientes e Familiares de 2016. Os participantes aprenderam sobre os estudos e ensaios atuais do ECD, como o ECD pode afetar vários órgãos do corpo, controle da dor, exames e gerenciamento de cuidados. Consulte os materiais do evento abaixo para saber mais sobre esse evento bem-sucedido.

Materiais do evento de 2016

Apresentações

As apresentações a seguir foram incluídas na agenda do Patient & Family Gathering de 2016 em Paris, França. Visite o canal daECD Global Alliance no YouTube para ver todos os vídeos publicados relacionados à ECD.

Presenter	Presentation Slides	Presentation Video
Stéphane Barete, MD	ECD Skin Issues	ECD Skin Issues
Giulio Cavalli, MD	ECD Lung & Heart Issues	ECD Lung & Heart Issues
Carine Courtillot, MD	Endocrinological Consequences of ECD	Endocrinological Consequences of ECD
Eli Diamond, MD (Presented by Juvianee Estrada-Veras, MD)	ECD Neurological Issues	ECD Neurological Issues
Benjamin Durham, MD	ECD Studies at MSKCC	See ECD Studies & Trials Panel
Philippe A. Grenier, MD	CT of Thoracoabdominal Involvement in Erdheim-Chester Disease	See ECD Scan and Radiology Panel.
Filip Janku, MD, PhD	Importance of Clinical Trials	See ECD Studies & Trials Panel
Kenneth L. McClain, MD, PhD	ECD Studies & Trials – Texas Children’s Cancer Center	See ECD Studies & Trials Panel
Augusto Vaglio, MD, PhD	Renal & Ureteral Involvement in ECD	Renal & Ureteral Involvement in ECD
Panel participants:Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD, Julien Haroche, MD, PhD, Filip Janku, MD, PhD, Kenneth McClain, MD PhD, Augusto Vaglio, MD, PhD	ECD Studies & Trials Panel	ECD Studies & Trials Panel
Panel participants:Marcus Chen, MD, Phillippe Cluzel, MD PhD, Phillippe Grenier, MD, Phillippe Maksund, MD	ECD Scan and Radiology Panel	ECD Scan and Radiology Panel
Physician panelists answer patient questions regarding Erdheim-Chester Disease.	Doctor Question & Answer Panel	Doctor Question & Answer Panel

Fotos

Materiais do evento de 2015

Apresentações

Veja as seguintes apresentações do Encontro de Pacientes de 2015 em Houston, TX.

Presenter	Presentation(s)	Videos
Timothy Craig Allen, MD, JD	Social Media in the Rare Disease World	Not available.
Naifa Lamki Busaidy, MD	ECD & Hormones	Not available.
Jean Campbell	Power of Patient Groups	The Power of Patient Groups
Susan Y. Chon, MD	Not available.	ECD and Skin
Maxine Grace de la Cruz, MD	ECD & Pain Management	ECD and Pain Management
Eli L. Diamond, MD	Braf Negative; ECD & Brain	Not available.
Nancy K. Feeley, RN, MS, CRNP	ECD & Exercise	ECD and Exercise
Horiana Grosu, MD	ECD & Lungs	ECD and the Lungs
Saamir Hassan, MD	ECD & Heart	ECD and the Heart
Filip Janku, MD, PhD	Importance of Clinical Trials	The Importance of Clinical Trials
Cynthia Kizer, RN, BSN	Insurance Appeals	ECD and Insurance Approval Issues
Chaplain Richard T. Maddox, BCC	Facing Key Spiritual Care Issues	Facing Key Spiritual Issues
Kenneth L. McClain, MD, PhD	ECD101	ECD 101
Omar Ozgur, MD	ECD & Eyes	ECD and Eyes
Susan Robertson, PhD, OTR/L, FAOTA	Financial Stability & SSI	ECD and Social Security Applications
Robert Zieve, MD	Integrative Medicine	Not available.

Fotos