CSL Vifor is a research-based pharmaceutical company with a strong background in the treatment of iron deficiency and anemia. They also operate in the fields of nephrology, cardiovascular diseases, gastroenterology, and rare diseases. Ahjo organized a peer support workshop for individuals with a rare autoimmune disease in collaboration with a patient organization.
Background & Challenge:
CSL Vifor aimed to gain a better understanding of how the disease affects patients in all aspects of their lives. Getting a diagnosis for this rare disease can take several years at worst. A variety of patients from various parts of Finland faced this challenge. The difficulty was reaching out to these individuals with this rare disease and bringing them together for a dialogue.
Life is tough for those living with a rare disease. People struggling with the illness need each other and support from society. The communication strategy was to gather information where the challenges are personally known, from the patients themselves. We invited patients to a half-day peer support workshop in collaboration with a local patient organization. During the workshop, we walked alongside the patients on their personal journey from symptoms to diagnosis. We heard about their experiences regarding access to treatment, the quality of care, practical aspects related to the disease, and the feelings of the participants. Additionally, we invited a specialist physician to provide an expert perspective on the specific disease and the state of rare disease treatment in Finland. The discussions held during the workshop were compiled into a report, which was published with the patients’ permission.
In the discussions held with experienced patient advocates, unique insights into the state of specialized healthcare in Finland emerged through the touching life stories of the participants. Participants found the peer support workshop to be enriching and empowering. In a feedback survey, the workshop received a top rating of 5/5, and there was enthusiastic anticipation for follow-up events.
“In my opinion, the workshop was exceptionally well-organized, and the facilitator was excellent. The report effectively captured the essence of the discussions. Many thanks!”
– Yvonne Thomson, Head of Market Access and External Affairs, CSL Vifor.