We talk to people with rare diseases and tell their stories. This shows other sufferers that they are not alone and gives relatives, medical professionals or other interested people the opportunity to better understand the situation of sufferers or to learn from their experiences.

Patient videos are boring and accompanied by dramatic piano music? Well, no, only the bad ones

Patient stories are a powerful tool for putting a face to abstract diseases, breaking down barriers and raising awareness. In the best case scenario, increased awareness of rare diseases leads physicians, sufferers or those around them to consider a rare disease earlier or at all, thus triggering initial suspicions which in turn lead to a diagnosis. Anything that contributes to getting more patients a definite diagnosis more quickly is good. Stories are available in written form, as videos or as podcasts. What do we do? Conceptualisation, script, patient acquisition, contracts, support of patients and relatives, coordination, production, post-production.

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