Excellence in Collaboration and Partnerships

Summary of work

Patients with rare diseases face specific challenges when it comes to getting access to information about their conditions: a lack of understanding among healthcare professionals and the wider community, lack of information and resources, a disparate community of patients and limited support groups. Patients with ANCA-associated vasculitis, a rare auto-immune disease with a high acute mortality risk, also face challenges due to the systemic nature of the condition that can lead to significant delays in diagnosis. Vifor Pharma was entering the orphan disease space and set out to forge collaborative partnerships with patient associations throughout Europe, in an effort to support the work being done by patient associations, to help build bridges and bring patients across Europe together, and to fill gaps in resources and information.

The result was SEE ME HEAR ME – a patient information initiative co-created with patient, carer and patient groups across Europe that has delivered an unprecedented, multilingual digital resource for patients (www.myANCAvasculitis.com). What’s more, the supportive efforts of Vifor Pharma have provided support for  the founders (Vasculitis groups from the NL, UK & IR) with the establishment of the first pan-European umbrella patient association dedicated to vasculitis conditions (www.vasculitis.eu).

Judges' comments

SEE ME HEAR ME had great reach with solid research. There was clarity on the collaboration and how the organisations supported the common goal, with a well aligned strategy to the objectives.