Skip to content
  • Countries
    • Finland
    • France
    • Germany
    • Greece
    • Italy
    • Ireland
    • Netherlands
    • Poland
    • Spain
    • United Kingdom
  • VPAGs
  • Hospitals
  • Projects
    • Patient Conference 2022
    • Videos Patient Conference
    • Videos Talkshows Dublin
    • FAIRVASC
    • SEE ME. HEAR ME.
    • Rare Revolution Magazine
  • Diseases

    Introduction

    • Vasculitis Classification

    Large Vessel Vasculitis

    • GCA (Giant Cell Arteritis)
    • Takayasu

    Small Vessel Vasculitis

    AAV (ANCA Associated Vasculitis)

    • EGPA
    • GPA
    • MPA

    Immune Complex Vasculitis

    • Cryoglobulinemic Vasculitis
    • IgA vasculitis (Henoch Schönlein)
    • Anti GBM Vasculitis (Goodpasture)
    • Anti C1q vasculitis (hypocomplementic)

    Medium Vessel Vasculitis

    • PAN (Polyarteritis Nodosa)
    • Kawasaki Disease

    Variable Vessel Vasculitis

    • Behçet
    • Cogan Syndrome

    Single Organ Vascilitus

    • Cutaneous Leucoclastic Vasculitis
  • News
  • About Us
    • Contact us
    • Our Mission
    • A Registered Charity

PROJECT OVERVIEW

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

vasculitis patient conference

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.

fairvasc

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. 

see me. hear me.

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. 

SEEME_210226
RRM Cover AAV

rare revolution magazine

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.

collaborate

join us today 

Do it Now

About us

  • We encourage and support Vasculitis Patient Advocacy Groups (VPAGs) to collaborate and grow stronger.
  • If there is no existing VPAG in a particular country we can  help to create one.
  • We collaborate with any institution willing to help us in achieving these goals.

Find

VPAGs

Hospitals

Countries

Act

Talk to us

Join us

Social Media
Facebook-f Twitter Google-plus-g Youtube Linkedin-in