PROJECT OVERVIEW
An overview of the projects we are (or have been) involved in
In 2026 the International Vasculitis Workshop took place in the Southern Hemisphere for the first time. Melbourne is, quite literally, the other side of the world from Europe — which meant our participation was limited. We were there nonetheless.
Three volunteers went to Melbourne, interviewed 20 researchers and clinicians, and created short video portraits — putting faces to the science of those dedicating their careers to improving the understanding, management, and quality of life of vasculitis patients worldwide. See video’s here…
November 14th and 15th 2025, patients, caregivers, clinicians and researchers from fifteen European countries met in Prague for the 2025 European Vasculitis Patient Summit.
The two-day event highlighted major developments in vasculitis care, including advances in treatment, the emerging potential of CAR-T therapy, and the practical impact of digital care pathways.
Speakers also explored the opportunities and risks of artificial intelligence, as well as new insights into the diagnosis and classification of ANCA-associated vasculitis.
Building on the success of the first summit in Madrid, we held a second summit on October 24 and 25.
This time, 30 patients, nurses and physicians from 11 different countries met in Amersfoort, the Netherlands.
The central theme this year was how to involve nurses more and better in the care of vasculitis patients, which led to interesting discussions, observations and recommendations.
In 2024 the 21st edition of this international scientific event took place in Barcelona and given the succes of the patient conference in Dublin it was decided to organise a similar conference in Spain this year.
To make sure the Spanish vasculitis patient would be the one who benefit most from this event, presentations were given in Spanish were possible. Presentions in English were translated on the fly by by professional interpreters. They also translated the Spanish presentations for people who did not speak Spanish.
Over a hundred patients attended and 12 sessions with a total of 14 presentations were given. We also interviewed 10 doctors in three talkshow sessions called “Meet the doctor”
We brought 20 doctors and patients from 8 different countries together, to discuss how we can identify the key challenges and unmet needs along the journey from both the physician and the patient perspective.
Collaboratively we tried to conceptualise valuable ideas to support both people living with AAV and physicians in overcoming them
An International Vasculitis Patient Conference has been held in Dublin on the 2nd and 3rd of April 2022.
11 sessions with a total of 15 presentations were performed, broadcasted, recorded and published on this website.
It was an excellent example on how patient advocacy groups from different countries, in close collaboration with researchers can be actively involved in scientific events and bring scientific data directly to patients.
Research into the rare condition Vasculitis needs sufficiently large quantities of data to enable well-informed conclusions about treatments and possible cures.
It is thus essential to combine the databases of patient registries of several countries to build a dataset of sufficient size to enable meaningful research.
FAIRVASC will use semantic-web technologies to link vasculitis registries across Europe into a ‘single European dataset’, and thus open the door to new research into these challenging diseases.
Vasculitis International and Vifor Pharma started a collaboration based upon the objective: “Create deeper insights into the patient and carer experience in ANCA-Associated Vasculitis (AAV), from diagnosis to treatment and the joint goal of increasing disease awareness about AAV“.
As part of the SEE ME. HEAR ME. initiative, Vifor Pharma created a dedicated educational platform for patients and cares.
Patients and carers from several Vasculitis Patient Advocacy Groups (VPAGs) contributed to the project through their input, including outlining their educational needs, sharing their stories and images.
Sponsored and lead by Vifor Pharma, the Rare Revolution Magazine published a special edition on ANCA Vasculitis on 15th of May 2020, to support the community celebrating the firs World Vasculitis Day.
The magazine was translated in many different languages.