The new AAV MASTERCLASS is now live!
The ANCA-associated vasculitis (AAV) MASTERCLASS is now live, an educational learning platform that gives you the information you need to understand more about the condition.
Through step by step modules, you can learn more about AAV and grow your self-management skills. Level 1 is now live, with three more levels to follow which will help you become an expert in AAV.
New useful resources now available to download
The e-brochure features 54 pages of information, patient stories, tips and resources for people living with ANCA-associated vasculitis (AAV), and those who care for them.
The dialogue tool is an infographic tool to help you discuss AAV with your healthcare professional, including what to expect from diagnosis to treatment.
to view or download the e-brochure
to view or download the dialogue tool
What’s new!
Congratulations, Peter Verhoeven!
We’d like to give a huge congratulations to Peter Verhoeven on his appointment as Knight of the Order of Orange-Nassau, a Dutch order of chivalry for people who have rendered outstanding service to society. Peter was nominated for his incredible work in supporting people affected by vasculitis, which includes his leading role in the Vasculitis Stichting (The Netherlands) and the foundation of Vasculitis International, two vasculitis patient organisations we work closely with.
To learn more about Peter’s work in vasculitis, visit www.vasculitisint.com or https://www.vasculitis.nl/
Discover the facts and figures about ANCA-associated vasculitis
Join our #StrengthInNumbers social media campaign created for Rare Disease Day - read and share the poster to raise awareness of AAV. For more information visit our Facebook page #MyANCAvasculitis
Click here to view the poster
View our 2020 highlights video
2020 has been a challenging year for everyone, but we have continued to work closely with patient advocacy groups to achieve our joint 2020 goal of growing awareness and knowledge of AAV!
Watch video
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
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
What is AAV?
Find out about AAV, including information on the different types and possible causes
Learn more
Diagnosis
Read about how AAV is diagnosed and understand the tests your doctor may carry out
Learn more
Treatment
& self-care
Discover the treatments you may receive for AAV and how they work, as well as how to self-care
Learn more
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.
