7th Annual ECD Patient & Family Gathering Milan, Italy

Lorenzo Dagna, MD, FACP
IRCCS San Raffaele Scientific Institute
Milan, Italy
July 12, 2019

Milan International ECD Patient & Family Gathering Group Picture 2019

Samenvatting van de bijeenkomst voor patiënten en familieleden

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 bronnen 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.

Programma's met een bijeenkomstagenda

Presentatie

The following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more over ECD. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients.
PresentatorPresentatiedia’sEnglish 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, arts, dr.The Drug Trial ProcessThe Drug Trial Process - Filip Janku
Julien Haroche , MD, PhDOrgan Involvement in ECDOrgan Involvement in ECD - Julien Haroche
Eli L. Diamond, artsECD and the BrainECD and the Brain - Eli Diamond
Ronald Go, MD (moderator)Question & Answer with the ExpertsPanel met vragen en antwoorden van deskundigen
Stephane Barete, MD, PhDSkin InvolvementSkin Involvement with ECD - Stéphane Barete
Mark Heaney, arts, dr.Mutations 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
Eli Diamond, artsECD Registry UpdateECD Patient Registry Update - Eli Diamond
ECDGAECDGA SluitenClose - The ECD Global Alliance Team

Ervaringen van deelnemers

“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

“Ik werk al meer dan 20 jaar in de gezondheidszorg en heb nog nooit zo’n zorgzame en toegewijde groep zorgverleners en vrijwilligers gezien of meegemaakt!”

– ECD-patiënt aanwezig

Foto's

Medisch symposium

Reception/Dinner Photos