An important problem with rare diseases is that their recognition is often delayed. With this program we want to try to improve the early recognition of rare diseases.
The concept underlying this initiative is that while we as humans are very capable of recognizing a certain pattern we can only do so once we have seen that pattern at least a number of times. The problem is that these diseases are so rare that almost no pattern recognition can occur through ‘normal life experience’.
With this initiative we hope to create a learning environment that allows pattern recognition to occur despite the rarity of these disorders. In this learning environment doctors will be exposed to photos of children with and without treatable & recognizable metabolic diseases.
To do so, we need photos of children with rare diseases at different stages of their lives (before and after diagnosis), as well as of ‘normal’ children, children without these conditions. For this we need your help!
In conclusion, with your help we expect to be able to help doctors and healthcare professionals to strongly improve their recognition skills, thereby enabling a more timely diagnosis, hence a better outcome.
The Exposure app is funded by Metakids and MEDonline. Click here for more information.
The Exposure app was developed in collaboration with doctors from the University Medical Center Utrecht, the Metabolic Diseases division, the Dutch patient organisation for Adults and Children with Metabolic Diseases (VKS) and MEDonline. They remain involved in the further development of the app.