by Asmaa Javed | Aug 14, 2025 | Webinars
[Arginine VasoPressin Deficiency (AVP-D)] Date: August 28, 2025 Time: 2:00 PM CT Speaker: Pat Gildroy, Ph.D Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience...
by Asmaa Javed | Jul 29, 2025 | News
We are sharing an opportunity to participate in the University of Alabama at Birmingham (UAB) Survivorship Study—a vital research effort focused on understanding the experiences, challenges, and needs of individuals diagnosed with Erdheim-Chester Disease (ECD). Your...
by Asmaa Javed | Jul 24, 2025 | Webinar Recordings
Xavier Solanich, MD, PhD is an internal medicine physician at Bellvitge University Hospital (BUH), where he specializes in the treatment of patients with immunological disorders and rare diseases, including histiocytosis. In addition to his clinical work, he serves as...
by Asmaa Javed | Jul 14, 2025 | Webinars
Date: Jul 24, 2025 Time: 4:00 PM CEST (Barcelona Time) Speaker: Xavier Solanich, MD, PhD Xavier Solanich, MD, PhD is an internal medicine physician at Bellvitge University Hospital (BUH), where he specializes in the treatment of patients with immunological disorders...
by Asmaa Javed | May 12, 2025 | Insurance and Financial Assistance
Social Security Disability Insurance (SSDI) or “Disability” provides monthly payments to people who have a disability that stops or limits their ability to work. ECD is on the SSA Compassionate Allowance list that is meant to reduce the waiting time to reach a...
