CNF/Global Genes RARE Child Neurology Workgroup
The goal of the workgroup is to better understand the needs of children living with rare genetic conditions that have a neurologic component. The workgroup, that includes corporate advisory members from CNF and our partner, Global Genes, advises both organization’s educational and advocacy efforts in this space. The initial strategic priority for this workgroup is to define the number of rare diseases that have a neurologic component; and of those, which disease begin in childhood.
Why is this a strategic priority?
Because children and their families who live with rare diseases often tell us that they feel isolated. We hope our organizations’ abilities to assist in defining this reality will, in turn, help these children and families understand there is a much broader support community in which they belong. This community can share support, educational resources, and opportunities for networking. The ultimate goal being for this population to feel empowered to actively participate in their health care in partnership with their provider teams; including child neurologists.
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