Introducing the RareChildNeuro 75% Fact

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Children & families who live with rare conditions often feel isolated. We want to change isolation to empowerment! 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…  Read More

Using Technology to Help with Difficult Conversations

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New Pilot Project Improving communication between pediatric neurologists and the families of children living with epilepsy “A majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead … go to a peer or the internet… providers were less willing to discuss these topics due…  Read More

Parents and Caregivers…Let’s Talk!

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Parents/caregivers of 12 to 30-year olds living with a complex neurologic condition, let’s talk! CNF’s new Caregiver Perspectives on Transitions Project is interested in your experiences with different aspects of transition to adulthood for children/young adults living with complex neurologic conditions. Through online focus groups and surveys we will explore medical transitions and transitions…  Read More