At the beginning of 2021, while harnessing the power of reflection, we asked ourselves a question – Does rare disease education mean rare attendance?
In many rare diseases, the time between diagnosis and initiation of therapy has been shortened, but the time between symptom onset and diagnosis has not. Is there a solution and what are our thoughts?
Connecting “Rare” with “Common”
The presentation of rare disease often involves multiple organs and systems. The disease may be rare but the symptoms are not. To make educational content truly relevant, “high frequency” symptoms should be identified and communicated with the learners. In addition, efforts should be made to find connection between a rare disease and medical conditions frequently present to daily clinical practice. Awaking interest in learning of a disease rarely seen can be made possible when the new knowledge is built on something familiar.
No to “Dumping”, Yes to “Alarming”
In many rare diseases, early symptoms are non-specific. Patients are often diagnosed incorrectly with other conditions initially. These misdiagnoses are specific. Alarming misdiagnoses should be a focus of the educational content. Information dump should be avoided. This is particularly important in rare disease education. When the disease is rare, it does not mean that educational programs will have less attendance from the healthcare providers. It is up to the educators to adapt, to innovate, and to find ways to effectively deliver the message.