Germany’s Tag der Selbsthilfe
Germany’s Tag der Selbsthilfe on 16 September highlights the important role of local self-help groups. Vasculitis International is connecting vasculitis SHGs across Germany, combining peer support close to home with wider cooperation, shared knowledge and patient advocacy.
EC revokes Market Authorisation Tavneos®
This is the news we hoped we would not have to publish.
The European Commission has adopted its final decision and revoked the marketing authorisation for TAVNEOS® (avacopan) in the European Union and the European Economic Area.
NEJM Retracts avacopan article
Last week added another significant step to the avacopan story: on 29 June 2026, the New England Journal of Medicine retracted the original 2021 ADVOCATE article on Tavneos.
CSL Vifor commitment to the AAV community
CSL Vifor Reaffirms Its Commitment to the Vasculitis Community Amid difficult news, a partner that stays present. On the same day that the EMA published its recommendation to revoke the marketing authorisation for Tavneos (avacopan), CSL Vifor — the company responsible for commercialising Tavneos outside the United States — issued a public statement to the […]
Tavneos update 26 June 2026
News | 26 June 2026 EMA Recommends Withdrawal of Tavneos (Avacopan) from the European Market The European Medicines Agency (EMA) has recommended that the marketing authorisation for Tavneos (avacopan) be revoked in the European Union. Vasculitis International responds to this decision with full respect for the regulatory process — and with a clear message about […]
Tavneos update 17 June
EMA strengthens liver monitoring requirements for Tavneos (avacopan) The safety committee of the European Medicines Agency (EMA), the PRAC, adopted new requirements for the use of Tavneos (avacopan) on 12 June 2026. Healthcare professionals will receive a direct communication from the marketing authorisation holder outlining the updated recommendations. What has been decided? The PRAC has […]
Cogan Questionnaire
Patients Worldwide Invited to Participate International Survey on Living with Cogan’s Syndrome. Oxford University Hospitals NHS Foundation Trust is conducting the first international survey on the lived experience of people with Cogan’s syndrome. The study is aimed explicitly at patients with Cogan’s syndrome and seeks responses from across the world — every contribution matters given […]
Update Tavneos® June 9 2026
UK regulator opens a review and medical journal launches an investigation Two further developments concerning avacopan — marketed as Tavneos, and in the UK as Avacopan Vifor — took place in the same week. The UK’s medicines regulator has opened its own review of the medicine, and the New England Journal of Medicine (NEJM) has […]
2026 Symposium Vasculitis Foundation
Denver, July 17–19 Our colleagues at the Vasculitis Foundation are hosting their 2026 International Vasculitis Symposium in Denver, Colorado from 17 to 19 July. Over three days, patients, caregivers, and specialists will come together for expert-led sessions on the latest in diagnosis and treatment, interactive breakouts by vasculitis type, and expanded mental health and wellness […]
International Vasculitis Day 2026 !
Every year on May 15th, the global vasculitis community pauses to be seen. Not just as patients. Not just as cases. But as people who deserve answers, the right diagnosis, and a full life. May is Vasculitis Month and many our patient organisations are planning all sorts of activities to raise awareness for this disease. […]
40th anniversary Vasculitis Foundation.
Vasculitis International is pleased to extend its warmest congratulations to the Vasculitis Foundation (VF) on the occasion of its 40th anniversary. On behalf of the vasculitis patient advocacy groups we represent across fourteen European countries, we celebrate this milestone and the extraordinary legacy it represents. Founded in 1986 by Marilyn Sampson, RN — herself a […]
Patients should not pay for failure in science
Vasculitis International has published its position statement on the ongoing regulatory review of TAVNEOS® (avacopan) — and warns that data integrity and risk/benefit analysis are two very different issues and must not be treated as one, when taking action. Otherwise the patient pays for science failure.
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.
ILD and ANCA
A large European multicentre study involving 162 patients provides important new insights into interstitial lung disease (ILD) associated with ANCA antibodies. The findings highlight that lung fibrosis is a serious and often under-recognised complication within the ANCA disease spectrum. One of the key messages emerging from this study is that patients with ANCA-associated ILD should ideally be managed by a multidisciplinary team. Although kidney involvement was common, it did not independently predict mortality. This suggests that lung disease severity at baseline may be the main driver of long-term outcomes in this population.
EMA starts Review Tavneos®
The current review is a so called Article 20 non-pharmacovigilance procedure. This type of procedure is used when questions arise about the scientific basis or robustness of the data that supported the original approval of a medicine.
It is not started because of new safety problems or concerns about side effects for patients.
Review Patient Summit 2025
In November, patients, caregivers, clinicians and researchers from more than a dozen European countries met in Prague for the 2025 European Vasculitis Patient Summit.
Challenges in the diagnosis, classification and prognosis of ANCA-associated vasculitis.
A landmark review in Nature Reviews Rheumatology calls for a new, integrated approach to ANCA-associated vasculitis.When diagnosis, classification, biomarkers and patient experience come together, care becomes truly personal — and outcomes improve.
22nd International Vasculitis Workshop
Melbourne Februari 21-25 2026
The 22nd edition of this international workshop on vasculitis will take place from February 21 to 25, 2026, in Melbourne, Australia. Organized by the Australian and New Zealand Vasculitis Society (ANZVASC).
3rd European Vasculitis Patient Summit
Prague 14-15 Nov 2025.
Once a year, patient representatives from across Europe gather for the European Vasculitis Patient Summit.This special meeting offers a unique platform to exchange experiences, share knowledge, and discuss current vasculitis topics.
Fasenra not reimbursed in France
French EGPA patients and their doctors received disappointing news recently when the French health authority (HAS) decided not to reimburse Fasenra (benralizumab) for treating EGPA. This decision has created significant concern within the EGPA community, as it limits access to what could be an important alternative treatment option.
EESG Meeting in Paris
On September 18th, 2025, leading EGPA specialists from across Europe gathered in Paris for the 10th meeting of the European EGPA Study Group. The research-focused conference, held at the historic Maison de l’Amérique Latine, brought together doctors and researchers to present and discuss the latest scientific developments in understanding and treating this rare autoimmune condition. A small number of patient representatives also attended this primarily medical meeting.
Reducing prednisone in EGPA
An additional analysis from the MANDARA study shows that steroid-free remission is possible for a subset of patients with EGPA. Biologic therapies such as benralizumab and mepolizumab can support this goal, with benralizumab showing somewhat better outcomes in this specific context.
Expert response to the BSR Guideline
In a recent article in Rheumatology (Oxford) the Canadian vasculitis experts Christian Pagnoux and Arielle Mendel reflected on the launch of the new BSR Guidelines for the management of AAV.
The authors are welcoming the new 2025 British Society for Rheumatology (BSR) guidelines while emphasizing why doctors should read ALL available guidelines, not just one.
Rituximab-alone in GPA and MPA
Real world experience A recently published study in Clinical and Experimental Rheumatology offers new real-world data from the University of Lübeck on the treatment of GPA and MPA. The official title of the article is “Real-world outcomes of rituximab- and cyclophosphamide-based induction therapy regimens alone and in combination over 24 months in ANCA-associated vasculitis”. Which […]
NICE approves Fasenra® for EGPA
The National Institute for Health and Care Excellence (NICE) has officially recommended benralizumab (Fasenra) as a new treatment option for adults with relapsing or refractory eosinophilic granulomatosis with polyangiitis (EGPA).
Two-years report: IL-5 medication safe and effective in EGPA.
The two-year MANDARA study found benralizumab and mepolizumab equally effective for eosinophilic granulomatosis with polyangiitis (EGPA). About two-thirds of patients achieved remission, nearly half stopped steroids, and relapses were rare. Both drugs were safe, reduced inflammation, and maintained asthma control—whichever was used first. Two Years, Two Medicines, One Goal: Long-Term Control of EGPA The […]
International Vasculitis Day – A global logo
Today, May 15th, is International Vasculitis Day. The entire month of May is dedicated to raising awareness about vasculitis, culminating in the celebration of International Vasculitis Day on May 15. This day was established just a few years ago with the support of leading medical experts and patient organizations from around the world. However, the […]
Vasculitis Conference in Chile
Challenges in the Diagnosis and Treatment of Systemic Vasculitis SOCHIRE Celebrates 75th Anniversary Chile may be far away for many of us, but we still want to take a moment to highlight a special event. The Chilean Society of Rheumatology (SOCHIRE) is hosting a congress on “Challenges in the Diagnosis and Treatment of Systemic Vasculitis” […]
10 jähriges Jubiläum der SHG Mainz
Die SHG Mainz (Sebst Hilfe Grupppe) feiert am 14. Dezember ihr 10-jähriges Bestehen! Herzlichen Glückwunsch an Hermann Götz! Gemeinsam mit dem Universitären Zentrum für Autoimmunität der Universitätsmedizin Mainz und der Rheumaliga RLP veranstaltet sie deshalb am 14. Dezember eine interessante Tagung in Mainz. Auf der Tagung wird die Vaskulitis aus drei verschiedenen Perspektiven betrachtet. Diagnose […]
How to improve health outcomes and care
THE VOICES STUDY New research from the University of Aberdeen has for the first time provided evidence of how best to deliver effective services that will improve health outcomes and experiences of care for the thousands of people across the UK living with rare conditions such as vasculitis. Care for people with vasculitis is organised […]
2nd European AAV Patient Summit Amersfoort
This event is the follow-up to the first patient summit that took place two years ago in Madrid. During that event, doctors and patients were brought together to discuss the typical challenges doctors and patients face when it comes to caring for patients with ANCA-associated vasculitis (AAV). One of the outcomes in Madrid was that […]
AIVA a New vasculitis organization in Italy
In July AIVA joined us at Vasculitis International. On Thursday july 26th 2024 this brand new vasculitis group was officially presented to the wider public, including the Italian parliament. AIVA(Associazione Italiana Vasculiti ANCA) focuses on ANCA-associated forms of vasculitis and they want to bridge the information gap, enhance information and increase awareness of AAV at […]
Takayasu France
We are very happy to welcome L’Association Takayasu France, as a member. Takayasu is a very rare disease, even compared to other forms of vasculitis. According to her president Christine Nicollet, Takayasu France exists to let these patients know that they are not alone. That there is an organization out there that can help them […]
2024 Barcelona Patient Conference
Following the success of the 2022 Vasculitis Patient Conference another one was organized in 2024 linked to the 21st International Vasculitis Workshop in Barcelona. Three members of Vasculitis International closely worked together with the Vasculitis Foundation (the patient organization from the USA) in order to make this happen. […]
GSK Animation video about EGPA
GSK (Glaxo Simih Kline) developed an interesting small animation video about EGPA It can be viewed here.
Patient Conference Dublin
On April 3-6 the most important scientifice conference on vasculitis took place in Dublin . It was the 20th International Vasculitis and ANCA Workshop. Preceding this scientific conference a patient conference was organized by Vasculitis Ireland Awareness and supported by a team from Vasculitis International and a number of international young researchers. They also interviewed […]
Results ADVOCATE study in NEJM
On February 18th 2021 the results of an important clinical study were published in the New England Journal of Medicine. The trial was conducted from March 15, 2017, until November 1, 2019 (last trial visit). In a phase 3 randomized trial (ADVOCATE) the avacopan product was compared with a tapering schedule of prednisone […]