For me, one of the most important things we, as a pharmaceutical company, can do is use our medical expertise, and support patients in gaining access to relevant and appropriate information. This may help them to better understand aspects related to their condition.
At Vifor Pharma Group, we engage with patient association groups and patients early on to identify the real burden of their disease and to identify specific needs and priorities together.
Understanding the patient journey is the foundation for everything.
Through regular interaction with representatives of patient associations, such as local workshops with patients and carers, we seek to ensure that whatever we produce serves their needs. I admire the passion and dedication of the people leading and managing patient associations, who mostly have the condition themselves or are looking after loved ones affected by it.
Patient engagement is especially important in rare diseases, where few or no treatment options exist. In 2019, we began collaborating across Europe with patients and carers on ANCA-associated Vasculitis (AAV). AAV is a group of progressive, rare and severe autoimmune diseases. It can affect the small blood vessels in different parts of the body, resulting in damage to vital organs such as lungs, kidneys and the heart. Together with the patient associations, we co-developed an initiative called SEE ME. HEAR ME. It’s an innovative platform for people affected by AAV, offering tools that help people take better care of themselves.
The goal is to empower people with AAV and their carers by making them feel seen, heard and understood.