8th Annual ECD Patient & Family Gathering Rochester, MN

Dr. Ronald Go, MD & Gaurav Goyal, MD
Mayo Clinic
Rochester, MN
April 27, 2023

Presentations

The following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more about ECD. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients.
PresenterPresentation SlidesPresentation Videos
Ronald Go, MD
Guarav Goyal, MD		Welcome
Brewer Kathy, Founder, ECDGAECDGA SuccessesECDGA Successes
Hendrie Paul, MD, Board MemberFocus on the FutureFocus on the Future
Jacobsen Eric, MDErdheim-Chester Disease: Overview of Biology, Clinical Presentation, and ManagementErdheim-Chester Disease: What Do We Know a Century Later
Abeykoon Jithma, MDPrescriptions for a Rare Disease. Is There a Cure?Prescriptions for a Rare Disease Video
Diamond Eli, MDA Balancing Act: Treating Disease and Side EffectsTreating the Disease and the Side Effects: A Balancing Act
Tobin Oliver, MDIt’s Not All in the Head: ECD and the BrainIt’s Not All in the Head: ECD and the Brain
Shekhar Skand, MDHormonal Woes – Finding the Right BalanceHormonal Woes Finding the Right Balance
D’Andre Stacy, MDIntegrative OncologyIntegrative Oncology
O’Brien Kevin, NPDepression and Anxiety in Serious Chronic IllnessDepression and Anxiety in Serious Chronic Illness: Diagnosis and Management
Nielsen AliceAlice Nielsen – Patient StoryAlice Nielsen – Patient Story
Atnip BarryBarry 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 DiscussionCancer Patient Navigator, Social Worker, and Financial Counselor Panel