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    EGPA

    Eosinophilic Granulomatosis with Polyangiitis (EGPA), previously known as Churg-Strauss Syndrome, is an inflammatory disease of small and medium sized blood vessels. The lungs and skin are commonly affected but it can affect other organs including the heart, kidneys, nerves and bowels.

    Eosinophils, a type of white blood cell that typically fights parasite infections and is related to allergies, are found in very high levels in EGPA, both in blood tests and in affected parts of the body.

    EGPA

    Patient Advocacy groups

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    APACS

    Disease(s):

    EGPA

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    respresenting patients with a primary form of vasculitis ?
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    Centers of Expertise

    No Expert Centre for this SPECIFIC disease. See Expert Centers covering ALL Vasculitis Diseases

    Are you a vasculitis expert centre ?

    dealing with one or more forms of a primary vasculitis
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    News

    FDA warning avacopan

    Update Tavneos Review – April 2026

    5 april, 2026 Geen reacties

    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.

    Read More »

    Rare Disease Day 2026

    28 februari, 2026 Geen reacties

    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.

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    Lungs and ANCA

    ILD and ANCA

    19 februari, 2026 Geen reacties

    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.

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    • 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.

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