Experience: “I found the interviews with the centres of expertise particularly pleasant and open. It is very important for patients to know how healthcare is organized in the centres of expertise . Through the knowledge map patients can determine if the specific offered care, fits their needs. After all, getting healthcare and experts that fit you, is in your own best interest as patient!”

Who: Ab Mulder, member of the Patient Organisation for Pulmonary Fibrosis

Participated in: Knowledge maps for Pulmonary Fibrosis

Experience: “The knowledge map is very important to me, because it shows that patients can compare options for their treatment when there is more than one centre of expertise. In the interviews there was mutual respect, insight and understanding between experts and patients. With this tool patients not only have a voice in the knowledge maps, but also in the organisation of healthcare.”

Who: Kees Diemel, member of the Dutch Patient Organisation of Crohn Disease and Ulcerative Colitis

Participated in: Knowledge maps for Short Bowel Syndrome, but he also participated in interviews with experts for several other rare diseases.

Experience: “It was very interesting to learn how healthcare is organised. What happens during a visit to the clinic can vary in different centres of expertise. Sometimes more than one doctor is involved. It was good to see that a whole team of experts took time to explain how they organize it, during the visit of the patientpanel.”

Who: Marjolein Koot, member of the Patients Organisation for Metabolic Diseases (VKS)

Participated in: Knowledge maps for Metabolic Diseases, but she also participated in interviews with experts for several other rare diseases.

Experience: “I’m very pleased to share my experiences with healthcare professionals, ten years after my son Charly (2,5) died. The commitment of experts to patients and organizing their healthcare is heartwarming.”

Who: Hiltje Oosting, member of the Patients Organisation for Metabolic Diseases (VKS)

Participated in: Knowledge maps for Metabolic Diseases, but she also participated in interviews with experts for several other rare diseases.