Vasculitis International works not only with patient organisations and hospitals, but also with various agencies that deal with vasculitis in particular or rare diseases in general.
THE EUROPEAN EGPA STUDYGROUP
The European EGPA Study Group (EESG) was established in 2018 by Giacomo Emmi (Cattinara University Hospital, Trieste, Italy), Benjamin Terrier (Cochin University Hospital, Paris, France), and Augusto Vaglio (IRCCS Meyer University Hospital, Firenze, Italy) with the intention to create a network of scientists and clinicians from European Eosinophilic Granulomatosis with Polyangitiis (EGPA) referral centers, gathering clinical and scientific excellence and expertise to:
- promote collaborative clinical and translational studies,
- enhance knowledge about the disease,
- to develop new recommendations about its diagnosis and treatment.
The EESG currently consists of over 100 centers across Europe and actively cooperates with patient advocacy organizations (PAOs), as well as other scientific societies and groups working in the field of vasculitis.
To strengthen this network, EESG meetings are organized every year to discuss and share ideas and brought up new research proposals and projects. Since its inception, several studies have been conducted on clinical and therapeutic aspects of the disease, while a tight collaboration with PAOs has been also consolidated, emphasising the priority mission of building patient’s empowerment, reinforcing the therapeutic alliance between patients and physicians, and creating opportunities for cohesion and education.
FOR ADDITIONAL INFORMATIONS REGARDING EESG RESEARCH ACTIVITY, PLEASE VISIT
THE EUROPEAN VASCULITIS SOCIETY
EUVAS (European Vasculitis Study Group) is an international collaborative research group focused on systemic vasculitides. It was established in the 1990s and has played a central role in improving the diagnosis, classification, and treatment of these rare autoimmune diseases.
Key Roles and Activities of EUVAS:
Clinical Trials:
EUVAS has organized and conducted several landmark randomized controlled trials (e.g., CYCLOPS, MEPEX, RITUXVAS) that have shaped current treatment protocols for AAV.
Standardization:
The group has contributed to standardizing:
Disease definitions
Disease activity scores (e.g., BVAS: Birmingham Vasculitis Activity Score)
Damage indices (e.g., VDI: Vasculitis Damage Index)
Registries and Data Sharing:
EUVAS supports large-scale data collection and registries to study long-term outcomes and facilitate epidemiological research.
Guideline Development:
Findings from EUVAS studies inform EULAR and ACR guidelines on the management of vasculitis.
International Collaboration:
EUVAS brings together clinicians, researchers, and statisticians across Europe and beyond to advance vasculitis research.
EURORDIS - RARE DISEASES EUROPE
EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
EURORDIS’ vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no one behind.
EURORDIS’ mission is to work across borders and diseases to improve the lives of all people living with rare diseases
ERN-RITA
The European Reference Networks (ERNs) are cross-border networks that bring together European hospital centres of expertise and reference to tackle rare, low prevalence and complex diseases and conditions requiring highly specialised healthcare.
ERN-RITA (European Reference Network on Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases) is a European network that connects expert centers across Europe to improve care for patients with rare immune system disorders.
What ERN-RITA Does:
Supports diagnosis and treatment of rare immunological diseases, including vasculitis.
Facilitates cross-border collaboration between specialists through virtual consultations.
Promotes research and data sharing on rare immune-related conditions.
Develops clinical guidelines and educational tools to improve care quality across Europe.