6th Annual ECD Patient & Family Gathering Orlando, FL

Julio Hajdenberg, MD
Orlando Health
Orlando, FL
November 16, 2018

Orlando International ECD Patient & Family Gathering Group Picture 2018

Patient & Family Gathering Summary

The 2018 Patient & Family Gathering (PFG) brought together 75 patients and family members from 4 countries. The patient/family community was joined by 44 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Fourteen 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

ApresentadorSlides da apresentaçãoVideo
Eric Jacobsen, MD, PhDThe Drug Trial ProcessThe Drug Trial Process - Eric Jacobsen
Ronald S. Go, médicoTreatment Options for ECDECD Treatment Options - Ronald Go
Cassie Nguyen, PharmD, BCOPDrug ManagementDrug Management for ECD Patients - Cassie Nguyen
Eli L. Diamond, MDECD and the BrainECD Patient Registry - Eli Diamond
Allison Mofsky, MA, CCC-SLPSpeech and Swallowing
Fady Hannah-Shmouni, MD, DABIM FRCPCEndocrine Dysfunction in ECDEndocrine Dysfunction - Fady Hannah-Shmouni
Patty Bobryk, MHS, PT, MSCS, ATPECD and Exercise
Colleen Scordato, DPT, Cert. MDTPhysical TherapyPhysical Therapy - Colleen Scordato
Rebecca DonnenbergNutrition for ECD PatientsNutrition for ECD Patients - Rebecca Donnenberg
Eli L. Diamond, MDECD Registry Update

Fotografias

Reception Photos

The following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on November 15, 2018 at the Orlando Health Regional Medical Center. Thank you to all participants for attending and engaging with the community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our ECDGA Facebook page.

Patient Meeting Photos

The following photos were taken during the ECD Patient & Family Gathering meeting on November 16, 2018 the Orlando Health – Orlando Regional Medical Center. Thank you to all attendees for participating during the meeting and social times, allowing great support and connections within this community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our ECDGA Facebook page. Please junte-se a nós again on July 12, 2019 in Milan, Italy!