Dystonia, Paroxysmal Disorders & NBIA

Patient Journey Cervical Dystonia: Lilys Journey

Countless visits to doctors, the feeling of “something’s wrong”, being undiagnosed for years – many rare disease patients are familiar with that. Our patient journey movie on Dystonia shows the different stations of the disease as it progresses – from first symptoms over diagnosis to treatment – and how it affects a patient’s everyday life as well as ways of coping.

Short Movie – Huntington’s Disease and Cervical Dystonia

Living with a rare disease is challenging not only for patients but also for their loved ones, who often become caregivers. Our short movie follows two friends—one with cervical dystonia, the other with a twin brother affected by Huntington’s disease—as they reconnect over the years and reflect on the progression of these conditions and the everyday challenges they face. The story is based on real patient experiences.

Patient Journey Cervical Dystonia (Health Insurance Officer)

Our patient advocate Monica opens up about her personal experience with a health insurance officer who did not take her condition seriously. Her story highlights the challenges many patients face when seeking understanding, support, and fair treatment within the healthcare system. A patient journey document can help in such situations.