CSL Vifor is a research-driven pharmaceutical company with a strong background in treating iron deficiency and anemia, and it also operates in rare disease therapeutic areas. CSL Vifor sought to gain a deeper understanding of how ANCA-associated vasculitis affects the lives of those living with the condition. In the worst cases, receiving a diagnosis can take several years. The diagnosis and treatment of rare diseases vary across different wellbeing services counties, and rare diseases are not sufficiently recognized in political decision-making.

Ahjo’s strategy and solution

The strategy was to gather insights from those who experience the challenges of the disease firsthand—patients themselves. Ahjo established relationships with the patient organization Vaskuliittiyhdistys ry and supported the facilitation of collaboration. The goal of the partnership was to bring the experiences and development proposals from patients and expert physicians regarding early diagnosis and treatment directly to decision-makers. Raising disease awareness and influencing decision-making were at the core of the collaboration.

Actions

Ahjo organized a peer-support workshop for people living with a rare autoimmune disease in collaboration with the patient organization. We heard experiences related to access to care, quality of treatment, practical aspects of living with the disease, and other participant perspectives. The discussions from the workshop were compiled into a report, which we published with the patients’ consent. The collaboration with the patient organization is ongoing. In 2024, we produced a white paper compiling key challenges and development proposals related to achieving early diagnosis and high-quality care. In addition to patient experiences, expert physicians were interviewed for the white paper. In spring 2025, we brought together representatives from the patient organization, a Member of Parliament, the Chief Physician of the rare diseases unit, a researcher, and an expert responsible for the national coordination of rare diseases at THL for a roundtable discussion. The aim was to discuss the white paper’s findings and identify solutions to the challenges.

Results

Discussions with patient experts have revealed unique insights into the state of specialized healthcare in Finland. Participants found the peer-support workshop valuable and empowering. The observations and development proposals gathered from patients and expert physicians have been successfully brought to the attention of decision-makers. Prior to the roundtable discussion, the disease was unfamiliar to some of the participants. The collaboration continues through a campaign targeting decision-makers and a SuomiAreena discussion, as there remains a need to further increase awareness of the disease.

“From patient journey insights to national dialogue at SuomiAreena, our collaboration with Ahjo has been highly professional and insightful. It shows that long-term partnerships—both with expert partners and patient organisations—are essential to building trust and, hopefully, to driving meaningful change together.”

— Yvonne Thomson, Head of Market Access and External Affairs, CSL Vifor