News

Nominations Open for 2022 Eurordis Black Pearl Awards

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

Periodontal EDS Patients May Show Rare Blood-vessel Abnormalities

Some people diagnosed with periodontal Ehlers-Danlos syndrome (pEDS) may also have vascular abnormalities, a case series highlights. Although rare, these cases add to previous reports of vascular complications in pEDS patients and support the need for comprehensive vascular assessment in this patient population. This information will likely help to…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Acer Plans Pivotal Trial of Edsivo in COL3A1-positive vEDS

Following a meeting with the U.S. Food and Drug Administration (FDA), Acer Therapeutics is planning to launch a potentially pivotal clinical trial to evaluate the safety and efficacy of its investigational therapy Edsivo (celiprolol). Edsivo was found in a small earlier trial to significantly reduce the rate of…