Tim Facciola, Certified Personal Trainer & Movement Specialist, joins us in a conversation about incorporating movement and exercise into life when managing a chronic illness or a rare disease, such as Erdheim-Chester Disease.
Learn about the treatments used to treat Erdheim-Chester disease (ECD), what to expect over time and the side effects that may be involved.
Taking part in a clinical trial can have many benefits for the patient and the community. We hope this session will help you better understand clinical trials, how to talk to your doctor about trials, and leave you feeling prepared with the right resources.
Dr. Michael Girschikofsky from the Elisabethinen Hospital Linz explains ECD to German-speaking ECD patients and families.
Listen to Kevin O'Brien, NP, and Josef Lacy discussing mental health challenges and effective techniques for overcoming them. Gain insights firsthand from an ECD patient who shares his inspiring journey triumphing over mental health issues.
Listen to an experienced ECD caregiver as she shares her insights and coping mechanisms for self-care.
Information Specialists offer free, one-on-one education, psychosocial support, and advocacy for blood cancer patients, caregivers, and families. They cover disease and treatment options, clinical trials, mental health support, and treatment team communication.
Discover insights from a leading expert on Rosai-Dorfman Disease. Gain a deeper understanding of this rare condition, its symptoms, diagnosis, and the latest treatment options. Don't miss out on expert knowledge that could make a difference!
The Leukemia & Lymphoma Society offers a free service called the Clinical Trial Support Center (CTSC) to help blood cancer patients, caregivers, and healthcare professionals find potential clinical trials and overcome enrollment barriers. This webinar will discuss the process and support Erdheim-Chester patients.
Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.
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.
Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience for those living with Arginine Vasopressin Deficiency, formerly known as Diabetes Insipidus.
