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see me. hear me.

Vifor Pharma and Vasculitis International co-created this project which seeks to empower people with AAV and their carers in feeling understood, seen and heard.

make aav patients feeling understood, seen and heard

...VPAG representatives were involved at every step of the development...
Dr_Dieter_Goette
Dr. Dieter Götte
Medical Lead Orphan Diseases - Vifor Pharma
SEEME_210226
Vifor_Photoshoot_Utrecht
SEE ME. HEAR ME. workshop Utrecht The Netherlands 2020

ABOUT THE PROJECT

Vifor Pharma is a pharmaceutical company with a strong focus on innovation for ANCA-Associated Vasculitis (AAV).  According to their mission statement they “strive to help patients around the world with severe and chronic diseases lead better healthier lives“. In order to deliver on that promise Vifor Pharma collaborates with Vasculitis International and other Pan-European patient associations to create awareness and drive education about AAV. 

 

Vasculitis International and Vifor Pharma therefore started a collaboration based upon the following objective: “Create deeper insights into the patient and carer experience in ANCA-Associated Vasculitis (AAV), from diagnosis to treatment and the joint goal of increasing disease awareness about AAV. This initiative aims to support and complement the valuable work already undertaken every day by patient organizations throughout Europe in supporting people living with AAV.”

 

As part of the SEE ME. HEAR ME. initiative, Vifor Pharma has created a dedicated educational platform for patients and carers  (myancavasculitis.com) and for healthcare providers (HCPs) (understandAAV.com).  Both websites are available in multiple different languages.  

Patients and carers from several Vasculitis Patient Advocacy Groups (VPAGs) and other patient organizations contributed to the project through their input, including outlining their educational needs, sharing their stories and images. They have been reviewing/validating materials before dissemination to the community.  
 

our contribution

We began our collaboration with a working meeting in October 2018 involving VPAGs from Germany, The United Kingdom, France, Ireland and The Netherlands. 
This was the start of an interesting collaboration where a lot of patients got interviewed and photographed. Professional photo shoots and video interview sessions were organized in Germany, The United Kingdom and The Netherlands. 

As a trained rheumatologist, vasculitis patient and contemporary digital artist, Shanali Perera was heavily involved in the collaboration. With the support of Shanali, several creative concepts were developed and collaborating patient organizations selected the one that best represented ANCA-Associated Vasculitis. The title “SEE ME. HEAR ME.” was also selected together to represent the needs of the community. 
Shanali developed the art shown on the patient images, aligned to the individual patient stories to make the often invisible visible.
 
All of this input and content was used to develop the educational platforms myancavasculitis.com and understandaav.com 
Both websites have been made available in multiple languages (currently English, French, Spanish, German, Dutch, Italian and Finish)

 

... this material is of great value to us...
Julie_Power
Julie Power
VIA - Ireland
France_Vascularites
Finland_VPAG
2x3Logo_Mainz
Vasculitis_eV

Learn more about this project

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MYANCAVASCULITIS.COM

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About us

  • 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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