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/
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
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!
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
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
Read about all our Rare Disease Day events with AAV patients from Germany and the UK … Read more
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
The website contains:
Find out about AAV, including information on the different types and possible causes
Read about how AAV is diagnosed and understand the tests your doctor may carry out
Discover the treatments you may receive for AAV and how they work, as well as how to self-care
Explore our tips on living with AAV for patients
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.