by Kathy Brewer | Jan 16, 2023 | ECDGA News, General News, Research
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...
by Kathy Brewer | Oct 20, 2022 | Awareness, ECDGA News, General News, Living with ECD, Research
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...
by admin | Jan 4, 2022 | ECDGA News, General News, Research
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,...
by admin | Jan 4, 2022 | ECDGA News, General News, Research
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...
by admin | Nov 3, 2021 | ECDGA News, General News, Research
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....
by admin | Oct 12, 2021 | ECDGA News, General News, Research
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...