7th Annual ECD Patient & Family Gathering Milan, Italy

Lorenzo Dagna, MD, FACP
IRCCS San Raffaele Scientific Institute
Milán, Italia
July 12, 2019

Milan International ECD Patient & Family Gathering Group Picture 2019

Resumen de la reunión con pacientes y familiares

The 2019 Patient & Family Gathering (PFG) brought together 49 patients and family members from 10 countries. The patient/family community was joined by 38 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Ten 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 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.

Programas con orden del día de la reunión

Presentación

Se han añadido las siguientes presentaciones con la esperanza de que resulten de ayuda a los pacientes, las familias y los médicos interesados en obtener más información Acerca de ECD. La ECDGA agradece los esfuerzos y las contribuciones de la comunidad médica para mejorar la atención a los pacientes con ECD.
PresentadorDiapositivas de la presentaciónEnglish Video
Lorenzo Dagna, MD, PhDWelcome & Overview of ECDWelcome and Overview - Dearbhaile Dhubhlaoich & Lorenzo Dagna
Lorenzo Dagna, MD, PhDDrug ManagementOverview of ECD and Drug Management - Lorenzo Dagna
Filip Janku, MD, PhDThe Drug Trial ProcessThe Drug Trial Process - Filip Janku
Julien Haroche , MD, PhDOrgan Involvement in ECDOrgan Involvement in ECD - Julien Haroche
Eli L. Diamond, MDECD and the BrainECD and the Brain - Eli Diamond
Ronald Go, MD (moderator)Question & Answer with the ExpertsMesa redonda de preguntas y respuestas con expertos
Stephane Barete, MD, PhDSkin InvolvementSkin Involvement with ECD - Stéphane Barete
Mark Heaney, MD, PhDMutations in ECDMutations in ECD - Mark Heaney
Carine Courtillot, MDEndocrinology & HormonesEndocrine Manifestations - Carine Courtillot
Augusto Vaglio, MD, PhDRenal & Ureteral InvolvementRenal & Ureteral Involvement in ECD - Augusto Vaglio
Roei MazorDaily CareDaily Care - Roei Mazor
Dr. Eli DiamondECD Registry UpdateECD Patient Registry Update - Eli Diamond
ECDGAECDGA: CierreClose - The ECD Global Alliance Team

Experiencias de los asistentes

“It was amazing to witness the dedication and commitment that these doctors displayed regarding the diagnosing, treatment, and research efforts as it relates to ECD. I am grateful for this rare opportunity.”

– Leretha R. Thomas, ECD Caregiver

“Llevo más de 20 años trabajando en el sector sanitario y nunca había visto ni conocido a un grupo de profesionales sanitarios y voluntarios tan atentos y entregados”.”

– Paciente con ECD presente

Fotografías

Simposio Médico

Fotos de la recepción y la cena