His path to diagnosis began with an experience all too familiar to patients with rare neurological conditions: navigating a fragmented healthcare system, moving from one specialist to another in search of answers, and trying to piece together information that no one seemed responsible for bringing together.

Diagnosis brought a different reality into focus: having a treatment available does not necessarily mean being able to access it. For years, Marian received less than 20% of the minimum recommended dosage for his condition.

What began as a personal need to understand and advocate for his own care soon developed into a commitment to representing the interests and voices of people living with Dysimmune and Inflammatory Neuropathies (DIN) across Europe.

Today, as Executive Manager of EPODIN, Marian works to bring patients, patient organisations, clinicians, researchers, policymakers and industry representatives around the same table. His work focuses on advocating for earlier and more accurate diagnosis, equitable access to appropriate treatment and care, greater patient involvement in research, and wider recognition of the real-life impact of DIN.

He is also a patient enrolled in a clinical trial and a Clinical Trial Ambassador, helping to improve understanding of clinical research and promote meaningful patient participation.

Marian brings to patient advocacy more than 20 years of professional experience in government strategic planning, business development and management consultancy.

His perspective is ultimately a simple one:

Patients should not need exceptional resilience, expertise or luck to obtain the standard of diagnosis, treatment and care that everyone should be entitled to expect.

At EPODIN, he works to ensure that individual patients’ experiences become evidence, that evidence informs policy, and that policy translates into meaningful improvements in people’s lives.