The latest news......
Update Tavneos® April 29th 2026
The FDA has moved from a review to a formal proposal to withdraw approval of Tavneos in the United States.
This is a more serious step than a review, but it is still not a final decision.
In Europe, the EMA review is still ongoing. No conclusions have been reached yet, and Tavneos is still available.
Update Tavneos Review – April 2026
The U.S. Food and Drug Administration (FDA) issued a Drug Safety
Communication on 31 March 2026, alerting healthcare professionals and patients to serious cases of drug-induced liver injury (DILI) in postmarketing surveillance of avacopan — including cases with fatal outcomes.
While the FDA operates outside the European regulatory framework,
its postmarketing findings are directly relevant to the EMA’s ongoing assessment.
Rare Disease Day 2026
Rare Disease Day is marked every year on the last day of February. On this day, patients, families, healthcare professionals and organisations around the world come together to raise awareness about rare diseases and the people living with them.
patients
Find Patient Advocacy Groups (VPAGs)
hospitals
Find vasculitis expertise
projects
Find out about the projects we are working on.