Patient centricity and engagement

We strive to apply patient centricity in all our ways of working and throughout the medicine’s life cycle to develop solutions that are truly patient led.

We support connectedness so that patients, caregivers, and patient organisations can connect and the community, and access relevant information and resources to support timely diagnosis, optimal treatment, and living well with their condition. We apply a proactive outreach to patient organisations and support the establishment or strengthening of patient organisations and networks in accordance with the policy on healthcare interactions.

We are a long-term sponsor of patient organisations such as the European and North American rare disease organisations EURORDIS and NORD respectively, the WFH, and the EHC, and support local patient organisations. Furthermore, important partnerships are in place with the PNH Global Alliance as well as with the not-for-profit organisations PFMD and EUPATI. An annual summary of the support provided to patient organisations can be found below.

Integrating the patient perspective and insights into research design and set-up is critical to ensure that future medicines adhere to patient needs. We have to date established four international patient councils to deliver insights into how clinical studies and study protocols should be designed. These enable us to choose patient-reported outcomes more appropriately for the targeted patient populations, design more patient-friendly forms and information materials for study participants, and adapt the design of the study to facilitate patient participation.

Humanitarian aid

We continue our support of the World Federation of Hemophilia (WFH) Humanitarian Aid Program, to which Sobi and Sanofi are Founding Visionary Contributors.

By providing a more predictable and sustainable flow of humanitarian aid donations, the program allows people living with haemophilia to receive consistent and reliable access to treatment and care. Read more about the program and our work for humanitarian aid here.