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 […]
Sharing a year of hope with the ECD community! View the 2022 Year-End Newsletter. Over the past two years, the ECD Global Alliance adjusted to the new norms of distancing and travel bans with more online connections and smaller, regional meetings. We have launched a Patient Navigator Program to help guide patients one-on-one through the […]
International Histio Advocacy Coalition Meeting Stockholm, Sweden September 2022 Patient advocacy groups from around the world, including the ECD Global Alliance, gathered in September 2022 as part of the Histiocytosis Society (HS) annual meeting. The HS is an international group of more than 200 physicians and scientists committed to improving the lives of patients with […]
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 […]
The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao. On September 29, 2022, the initiative brought over 65 families from the China region together […]
Join us virtually on October 7, 2022! Register for Online Attendance Times are shown in Eastern U.S. Time. 10:00 am – Dr. Robert Franklin Welcome to the University of Cincinnati! Information will be shared about the UC clinic, staff, specialists they work with, and what makes their center special. 10:15 am – […]
June 3, 2022 – The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida. The Erdheim-Chester Disease (ECD) Global Alliance is proud to announce a new emerging ECD Referral Care Center located at the University of Florida (UF) in Gainesville. Dr. Ali Ataya, who specializes in pulmonary […]
The ECD Global Alliance (ECDGA), a non-profit dedicated to supporting people affected by an ultra-rare blood cancer known as Erdheim-Chester Disease (ECD), honors deserving volunteers during National Volunteer Week. ECDGA volunteers are the life force of the organization, supporting its small staff and contributing more than 2,000 hours of service to numerous programs […]
Rare Disease Day is on February 28, 2022! In the United States, a disease is considered rare if it affects fewer than 200,000 Americans, 7,000 illnesses fall into this category, with 1 in 10 Americans being affected. Patients that have a rare disorder have longer periods of suffering before finding answers. Often, patients are treated “off-label” (treatments […]
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 […]
Last updated: January 16, 2023
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