Does the following situation sound familiar to you? Your doctor tells you that you are diagnosed with a certain disease, but you don’t understand what that means exactly. When you get home, you search the internet for information. Usually, you find it quickly and in abundance, but which sources fit your particular wants and needs, and which ones can you trust?
This is precisely the situation we want to help people with rare and complex diseases. These patients are often overwhelmed when finding their way around the health system. Access to therapies, aids, or general information on dealing with the disease is often problematic or lacking.
This is why admedicum, together with the German Muscular Dystrophy Society (DGM), has developed patient2care – a solution that combines digital and analog components and that provides patients and their relatives with simple support in living better with their diseases. patient2care is a knowledge platform developed through co-creation with & for patients.
The solution is designed to help patients and relatives find reliable information and support on various aspects of their disease. In doing so, the platform always uses existing and validated information to ensure high quality and reliability.
Together with the newly formed patient organization for Alström syndrome, we aim to adapt patient2care® to this particular complex and rare disease. People suffering from Alström syndrome and their relatives need support and help, as the disease is very difficult to diagnose and features multiple different and individual clinical patterns and manifestations.
This makes navigating the maze of available information and support especially difficult. Bernd Rosenbichler – founder of the new Alström patient organization in Germany and father of an Alström child himself – will share his experience, views, and motivation with us.