Listening to patients
We can learn so much from patients. For example, our work in anti-neutrophil cytoplasmic auto-antibody-associated vasculitis (ANCA associated vasculitis), a debilitating rare disease, focuses on listening to those affected, and analysing their concerns.
Understanding of the patient burden
Pulling together the frustrations, problems and information needs of patients, contributes to a better overall understanding of the burden of the disease. This helps us to provide patients with meaningful information, empowering them and making it a less lonesome experience.
The job I do every day is directly linked to patients. People call, write or even fax asking for information. Often, we’re their last resort and they’re frustrated. I can totally empathise with this as I have a child with autoimmune disease and ten years ago, I was in their position calling pharma companies and university hospitals in search of effective treatment options. I understand the situation of someone trying to get information about promising treatments.
Going the extra mile
We operate within highly regulated boundaries, but wherever possible, we try to go the extra mile and provide patients with individual support. The work done by employees on occasions may be far from the immediate needs of the patient, but we’re one company, and as far as patients are concerned, we speak with one voice. When you think about the patient’s world, you realise that even small actions can make a big difference.