Today is Undiagnosed Day, a yearly event which is used to raise awareness of the individuals and families who are affected by living with an undiagnosed disease, and the emotional, physical and financial impact it has on their daily lives. A rare disease comes with its own numerous hurdles and burdens, but for families, without a diagnosis, this burden increases. With 80% of rare diseases having a genetic origin, we need to use days like today to help raise the importance of genetic testing in the diagnostic pathway, not only with the general public but with policymakers, healthcare authorities and the pharmaceutical industry as a whole.
Genetic testing is becoming cheaper and we must advocate on behalf of patients and their families so that we can start to research their disease, and explore new treatments. But none of this can happen without people talking about it. These families show extraordinary levels of perseverance, determination and grit in their pursuit of an official diagnosis, and coping with the limitations of their healthcare systems
Help do your part and make some noise this Undiagnosed Day to help these individuals have their voices heard
Undiagnosed Rare Disease Day is celebrated on several different days around the world but every day is undiagnosed for the families living in the world of the unknown. RUN celebrates #UndiagnosedDay on April 29th. The main objective of Undiagnosed Rare Disease Day is to raise awareness for the undiagnosed rare disease community among the general public and decision-makers about undiagnosed rare diseases and their emotional, physical and financial impact on the lives of the patients and their families