The CNF/Global Genes Rare Child Neurology Workgroup wants to understand the needs of children living with rare genetic conditions that have a neurologic component. Our first priority was determining this population and we are excited to introduce
The RareChildNeuro 75% Fact.
We envision children and families belonging to a community that can share support, educational resources, and opportunities for networking.
We envision the RareChildNeuro community feeling empowered to actively participate in their health care in partnership with their provider teams; including child neurologists.
Help us to further explore this population, to uncover ways we might be able to help.
If you’d like to be a part of the network we are building, click here.
Will you help share this information on social media?
Here are some cut-and-paste options or simply click “Share Now”!
Over 3,000 genetic conditions affect the neurologic system – 75% of these conditions affect children. Families who live with rare conditions often feel isolated, but we want to change isolation to empowerment. @CNFoundation @globalgenes. Learn how you can be part of this community: https://bit.ly/2EmogJE
3000+ genetic conditions affect the neurological system! Learn how you can help raise awareness and help build a RareChildNeuro community https://bit.ly/2EmogJE #rarediseaseday @child_neurology @globalgenes
*The RARE Child Neurology Workgroup includes select members from Global Genes Corporate Alliance and CNF Corporate Advisory Board that advise both organization’s educational and advocacy priorities for children living with rare neurologic conditions.
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