Uplifting Athletes, a nonprofit organization dedicated to serving the rare disease community, has announced that Dr. Jithma Abeykoon will receive a $20,000 research grant as a member of Uplifting Athletes’ 2023 Young Investigator Draft Class. Dr. Abeykoon was nominated for the grant by the Erdheim Chester Disease Global Alliance. Dr. Abeykoon is Assistant Professor in […]
New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients A new paper published in Lancet eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD). The paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global […]
A rare disease advocacy group awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study. Uplifting Athletes is a nonprofit organization focused on using the platform of college football to shine a spotlight on rare diseases. Founded in 2007, Uplifting Athletes funds research and other initiatives, bringing hope to rare communities. Each year the […]
The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to Italy doctor to explore the genetic landscape of ECD. The ECD Global Alliance (ECDGA) has awarded the 2021 ECD Research Grant to Dr. Francesco Pegoraro, with Meyer University Children’s Hospital, Florence, Italy. The winning proposal, Exploring the genetic landscape of Erdheim-Chester disease by integrating […]
Tuesday, November 16, 2021 Join the experts during this scientific meeting to learn and share findings for histiocytosis. The 2021 Erdheim-Chester Disease Virtual Medical Symposium will be held online from 9:00 am to 2:15 pm CT (UTC -5) on Tuesday, November 16, 2021. During this conference, medical professionals from around the world will gather to share […]
You can play a big part in fighting ECD. If you are a patient or direct caregiver, please participate in this survey by October 30, 2021. Take the Survey When the ECD Global Alliance (ECDGA) was formed research was needed to help improve the diagnosis and treatment of Erdheim-Chester Disease (ECD). Little was known about […]
National Comprehensive Cancer Network (NCCN) Guidelines for Histiocytosis Published March 2021 The ECDGA is pleased to announce that the National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—has published a new NCCN Guidelines® for Histiocytosis. These clinical practice guidelines provide the latest evidence and expert-consensus for diagnosing and treating the three most common forms […]
What is a consensus? A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of the disease. This group of experts agree on evidence-based and state-of-the-art (state-of-the-science) knowledge. Its main objective is to counsel physicians on the best possible and […]
Are you a part of the ECD Patient Registry? Did you know that it is extremely important to take part in such a registry? Understanding every aspect of trials, registries, or simply getting treatment for a rare disease can be overwhelming. Let us help explain the importance of a patient registry, and why you should […]
Last updated: January 16, 2023
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