Guidelines for Ensuring Access to Care and Treatment for Rare Disease Patients

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Global Genes and Child Neurology Foundation Outline “Guiding Principles of Rare Disease Care and Patient Access” in Joint Report, Urging Health System Stakeholders to Help Protect Patients. Global Genes and the Child Neurology Foundation, as part of the Rare Access to Critical Therapies (ACT) collaboration, announced today the joint release…  Read More

National Academies of Medicine releases draft of proposed guidelines for COVID-19 vaccine, seeking public feedback

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On Tuesday, September 1, the National Academies of Medicine (NAM) released a draft of their proposed guidelines for the distribution of a potential COVID-19 vaccine once it becomes available.  The public has been given the opportunity to provide their thoughts on this document until 11:59 ET on Friday, September 4, 2020.   We at the Child Neurology Foundation recognize…  Read More

Getting to Know the CNF Team – Greta Pittard

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We’d like to welcome Greta Pittard to the CNF Team. To help you get to know her, Greta answered a few questions to share with the CNF community. What’s your role at CNF? I am the Chief Operating Officer for Child Neurology Foundation. How do you spend your time when…  Read More

Getting to Know the CNF Team – Clare Hennig

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In 2020, we’re making some additions to the CNF team to help us better serve the child neurology community. Please join us in welcoming Clare Hennig, who will begin work with our communications team in May. What’s your role at CNF? I’m the contract communications manager, so my main focus…  Read More

Getting to Know the CNF Team – Jessica Nickrand

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Whenever we bring on new staff at CNF, we like to introduce them to our community. Meet Jessica Nickrand, who joined the CNF team in March 2019. What’s your role at CNF? I am a Manager of Programs here at CNF, and my focus will be primarily on transitions of…  Read More

CNF’s Internal Response to COVID-19

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In addition to offering support and guidance to our community in the time of COVID-19, we also want to share an update of how CNF is approaching COVID-19 as a team. In an average year, CNF staff are busy attending conferences, meeting with partners and funders, and planning face-to-face events…  Read More

CNF & CNS’ Joint Official Response to COVID-19

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In recent months, SARS2-CoV-2, a new form of a class of viruses referred to as Coronavirus has caused an illness known as COVID-19. COVID-19 has made headlines around the world and its presence in the US is escalating rapidly. The Centers for Disease Control (CDC) is providing updates daily. We…  Read More

CNF’s 2020 Education Initiative

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Every year, the Child Neurology Foundation’s (CNF) Board of Directors identifies an important Education Initiative that impacts the entire child neurology community. In 2020, this Education Initiative is Shortening the Diagnostic Odyssey. Our board has decided to dedicate two years to this topic. There are many reasons why Shortening the Diagnostic Odyssey…  Read More

CHICA’s Next Steps

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In a recent blog post, we talked about the importance of having conversations about SUDEP, and shared some resources to help facilitate this conversation. In 2018, CNF worked with Digital Health Solutions LLC and Greenwich Biosciences Inc. to create a SUDEP module for the Child Health Improvement through Computer Automation (CHICA)…  Read More