IT startup launches software to encourage physician-family conversations about epilepsy

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NEWS RELEASE INDIANAPOLIS — Physicians can now be alerted to pediatric patients’ risk of sudden unexpected death in epilepsy, or SUDEP, during routine primary care visits by using software developed and commercialized by a researcher-entrepreneur at the Indiana University School of Medicine. Digital Health Solutions LLC, founded by Dr. Stephen…  Read More

A RARE conversation: RARECast podcast interview with Amy Miller

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Just before the holidays, our own Amy Miller was a guest on the RARECast podcast, a podcast by Global Genes that’s hosted by Daniel Levine. RARECast explores “the intersection of rare disease with business, science, and policy”. In this episode, Daniel talks with Amy about the THRIVE Initiative, collaboration, and the importance…  Read More

CNF Top 8 of 2018

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As this year draws to a close and we get ready for the year ahead, it’s important to look back at everything we’ve accomplished in 2018. With the support and collaboration of our community, CNF was able to roll out new resources; connect with doctors, researchers, and families; and bring…  Read More

Apply Now for CNF Family Grants

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  October 23, 2018 Dear CNF Partners, In 2014, the Harnett Grant was founded by Mr. Michael Harnett, as an enduring memorial to his nephew, Brendan Michael Harnett. Brendan was diagnosed with infantile spasms and passed away before his first birthday. The Child Neurology Foundation gratefully partners with the Harnett family again…  Read More

Rare Access to Critical Therapies (ACT) Stakeholder Summit

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CNF is proud to be co-convening the first of-its-kind All Stakeholder Access to Critical Therapies Summit with Global Genes on October 5, 2018 in Irvine, CA. The issue of access has huge implications for every health system stakeholder – patients, providers, payers, government, industry and investors – from ‘downstream’ at the point…  Read More

FDA Approves Epidiolex®

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The Child Neurology Foundation is pleased with the Federal Food & Drug Administration’s (FDA) approval Epidiolex ®, first prescription pharmaceutical formulation of highly-purified cannabidiol (CBD) and the first in its class of anti-epileptic drugs. It has been approved for the treatment of Lennox-Gastaut Syndrome and Dravet Syndrome – rare forms…  Read More