Introducing
SEE ME
HEAR ME
For patients, relatives & friends
#myANCAvasculitis
Martina: MPA patient, and
Maresa: GPA patient, Germany
Learn more about
ANCA-associated
vasculitis
Disease information
Coping strategies
Self-care
#myANCAvasculitis
Hermann: GPA patient, Germany
Explore
Patients'
experiences
Original art
Personal stories
#myANCAvasculitis
Hellen, GPA patient, Netherlands
Seek
Local support
Events
Patient support
organisations
#myANCAvasculitis
Rina, MPA patient, Netherlands

What’s new!

It’s Vasculitis Day on 15th May – show your support!

Join our #VasculitisDay social media campaign and share your V for Vasculitis selfie – visit our Facebook page #MyANCAvasculitis. And you can also read and share our Vasculitis Day infographic poster –
click here for more

Rare Revolution Magazine

Check out the May edition of Rare Revolution Magazine – dedicated exclusively to ANCA-associated vasculitis, with a spotlight on our See Me. Hear Me initiative… Read more



European Conference of Rare Disease: two posters presented virtually to mark Vasculitis Day, May 15th

SEE ME. HEAR ME. Support for anyone living with, or affected by, ANCA-associated vasculitis (AAV)… Read more

Management of daily ANCA‐associated vasculitis (AAV) self‐care needs: A suite of new online resources… Read more


Rare Disease Day

Read about all our Rare Disease Day events with AAV patients from Germany and the UK … Read more


Watch our latest videos

A Day in the Life and A Rare Connection - watch Martina and Maresa, two patients from Germany, talk about their personal experiences and how social media brought them together … Read more

EN patient brochure
EN patient brochure

This website is designed to help empower anyone living with, or affected by, ANCA-associated vasculitis (AAV).

The website contains:

  • Information on the disease, how it is diagnosed and what treatments are available, as well as a section on living with AAV
  • Tools that will help you monitor your condition and discuss your condition with your doctor
  • First-hand videos an insights from people currently living with AAV
  • Tips for carers to overcome the challenges they may face
AAV patient AAV patient

What is AAV?

Find out about AAV, including information on the different types and possible causes

AAV MPA patient, Jeremy AAV MPA patient, Jeremy

Diagnosis

Read about how AAV is diagnosed and understand the tests your doctor may carry out

AAV EGPA patient, Catherine AAV EGPA patient, Catherine

Treatment
& self-care

Discover the treatments you may receive for AAV and how they work, as well as how to self-care

AAV GPA patient, John AAV GPA patient, John

Living with AAV

Explore our tips on living with AAV for patients

AAV EPGA patient, Iva, and her carer, Birgitta AAV EPGA patient, Iva, and her carer, Birgitta

I’m a carer

Information for anyone caring for a friend or family member with AAV

AAV patient association group representatives were involved at every step of the development of the creative initiative and even helped to choose its name SEE ME. HEAR ME and the accompanying artwork from a series of designs created by Shanali – an artist, rheumatologist, and vasculitis patient.

SEE ME. HEAR ME forms part of Vifor Pharma’s mission to help patients around the world with severe and chronic diseases lead better, healthier lives.

Co-created with Patient Association Groups from across Europe, SEE ME. HEAR ME seeks to empower people with AAV and their carers in feeling understood, seen and heard.

Watch the video to learn more.

AAV banner urging patients to stay up to date on the Covid-19 situation
AAV banner urging patients to stay up to date on the Covid-19 situation
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