New study 2020

The burden of searching for a diagnosis in non-diagnosed patients from a holistic perspective


Patients without diagnosis can have a wide range of symptoms. A misdiagnosis or a delayed diagnosis can have a serious impact on their quality of life.


A better understanding of the symptoms experienced by undiagnosed patients will allow us to group them and analyse the burden of disease. This will help us to identify unmet needs and gain a better understanding of how to improve quality of life from a 360-degree perspective.


A clinical and psychosocial study that will use information provided directly by patients and their caregivers through use of validated scales to report on quality of life data.

Research is the heart of Share4Rare. By working together we can help to advance the research efforts in rare diseases. That's why we need you: join the community and participate in research!

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