by Kathy Brewer | Jan 16, 2023 | News, Research & Awareness
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 | Community & Support, News, Research & Awareness
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 | Feb 24, 2022 | Community & Support, News, Research & Awareness
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...
by admin | Jan 4, 2022 | News, Research & Awareness
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 | News, Research & Awareness
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 | Dec 16, 2021 | Community & Support, News, Research & Awareness
A new year of hope is on the horizon for the ECD community! View the 2021 Year-End Newsletter. The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester Disease with a matching gift campaign through December 31, 2021! Thanks to...
