Amy: At the Child Neurology Foundation, we actually have
four core values, and one of them is collaboration.
Of the 7,000 rare disorders, half of them have a neurological component
and of those 75 percent originate in childhood,
so that foundational work that Global Genes and the Child Neurology Foundation
has really allowed for more awareness and education
really about mapping the patient journey.
While there is great value in the rare disease community
advocating for single disease awareness, we also really believe in the power
of connecting the human experience, and that what one family experiences
in their rare disease community could be very similar to a family's experience
in another disease area. And wouldn't that again be powerful if we can
collaborate and share that to help people, again, feel not isolated.
The only thing they need to remember is that they're not alone.