An overview of the projects we are (or have been) involved in
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.