8th Annual ECD Patient & Family Gathering Rochester, MN

The 2023 Patient & Family Gathering (PFG) brought together 59 patients and family members from the US and Canada. This was the first in-person, international conference held by the ECDGA following the COVID pandemic. The patient/family community was joined by 41 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Twelve 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 resources 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.

Presenter	Presentation Slides	Presentation Videos
Ronald Go, MD Guarav Goyal, MD		Welcome
Brewer Kathy, Founder, ECDGA	ECDGA Successes	ECDGA Successes
Hendrie Paul, MD, Board Member	Focus on the Future	Focus on the Future
Jacobsen Eric, MD	Erdheim-Chester Disease: Overview of Biology, Clinical Presentation, and Management	Erdheim-Chester Disease: What Do We Know a Century Later
Abeykoon Jithma, MD	Prescriptions for a Rare Disease. Is There a Cure?	Prescriptions for a Rare Disease Video
Diamond Eli, MD	A Balancing Act: Treating Disease and Side Effects	Treating the Disease and the Side Effects: A Balancing Act
Tobin Oliver, MD	It’s Not All in the Head: ECD and the Brain	It’s Not All in the Head: ECD and the Brain
Shekhar Skand, MD	Hormonal Woes – Finding the Right Balance	Hormonal Woes Finding the Right Balance
D’Andre Stacy, MD	Integrative Oncology	Integrative Oncology
O’Brien Kevin, NP	Depression and Anxiety in Serious Chronic Illness	Depression and Anxiety in Serious Chronic Illness: Diagnosis and Management
Nielsen Alice		Alice Nielsen – Patient StoryAlice Nielsen – Patient Story
Atnip Barry		Barry Atnip – Patient Story
Abeykoon Jithma, MD Diamond Eli, MD Goyal Guarav, MD Hendrie Paul, MD		Questions & Answers with the Experts
Young Angela, LSW Blackmer Emily, MSW Bargfrede Melissa, MBA	Patient Support Panel Discussion	Cancer Patient Navigator, Social Worker, and Financial Counselor Panel