A diagnosis changes everything 

That’s why we work tirelessly to end the diagnostic odyssey for individuals and families around the world. Obtaining a diagnosis is crucial, because as long as a disease remains undiagnosed, doctors have no way of knowing what causes it.

This means that the health care system does not know how the person should be treated and whether a medicine helps or overturns. No one knows how the disease will manifest itself (no prognosis exists) nor can anyone give genetic advice on heredity. 

Lacking a diagnosis also means that it can be difficult to get help from the community to which the child should be entitled, such as an aid. It can also be difficult to get help from the health care system when there is no diagnosis, such as habilitation, physiotherapy, speech therapist, etc.

It is extremely difficult for parents not to know why their child is sick, despite the fact that the healthcare system has made many thorough investigations during their child's upbringing.