by Steven May Jr | Aug 7, 2024 | Community Fundraisers, News
Represent your country, your state, or your fight in our Virtual Run/Walk/Roll! By wheelchair, bike, or other means, come join us in this virtual event held during ECD Awareness Month (September 9-30). Register today as a part of a team or as an individual....
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 | Dec 4, 2022 | News
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...
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 Kathy Brewer | Oct 14, 2022 | Community & Support, News
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...
