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 | Nov 11, 2022 | News
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...
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
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...
