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APACS

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  • Diseases: EGPA
  • Italy

Welcome !

There are many excellent associations dedicated to rare diseases. As patients, however, we felt the need to join together to form one dedicated exclusively to EGPA, whose primary purpose was to be close to patients and their loved ones.

Each with a different background, all our members suffering fromEGPA (formerly known as the Churg Strauss Syndrome) share similar moments of clinical history: the pain felt at the time of the manifestation of the first symptoms, the feeling of loss, the difficulty in finding specialized doctors able to follow in continuously each case.

Our goal is to provide support to those who need it, offering an overview of the disease, as well as useful links and indications on how to obtain exemptions and possible disability. We are available to anyone who wants information or comfort both through our website and through our Facebook page.

Furthermore, thanks to donations and membership fees, we organize public meetings and sponsor events aimed at increasing awareness of the disease throughout the country.

Contacts

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Eugenia_Durante

Durante, Eugenia

  • Email: infoapacsegpa@gmail.com

Benvenuto !

APACS – Un’associazione di pazienti per i pazienti: il nostro obiettivo

Esistono tante ottime associazioni dedicate alle malattie rare. In quanto pazienti, però, sentivamo il bisogno di unirci per formarne una dedicata esclusivamente all’EGPA, il cui scopo primario fosse quello di stare vicini ai pazienti e ai loro cari.

Ognuno con un vissuto diverso, tutti i nostri soci affetti dalla EGPA (formalmente conosciuto come Sindrome di Churg Strauss ) condividono momenti di storia clinica affini: il dolore provato al momento della manifestazione dei primi sintomi, la sensazione di smarrimento, la difficoltà nel trovare medici specializzati in grado di seguire in modo continuativo ogni caso.

Il nostro obiettivo è proprio fornire supporto a chi ne ha bisogno, offrendo una panoramica sulla malattia, così come link utili e indicazioni su come ottenere esenzioni ed eventuale invalidità. Siamo a disposizione di chiunque voglia informazioni o conforto sia tramite il nostro sito, sia tramite la nostra pagina Facebook.

Inoltre, grazie alle donazioni e alle quote associative, organizziamo incontri pubblici e patrociniamo eventi volti ad aumentare la consapevolezza della malattia su tutto il territorio nazionale.

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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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