Decoding Developmental Epilepsies

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We serve two distinct communities. First, we serve those living with SCN8A and their families. Their resilience and hope inspire a network of support, uniting a global team of researchers, clinicians, epilepsy leadership groups, and pharmaceutical companies. Collaborating for a cure, we unite in our mission to advance the science of SCN8A, see improved outcomes and quality of life for everyone touched by SCN8A. Next, DEE-P Connections provides support for families of children with severe Developmental & Epileptic Encephalopathies (DEEs), including the undiagnosed DEEs. We offer webinars, a comprehensive resource center, and collaborative partnerships to share knowledge, breakthrough research efforts, and improved measurement tools for inclusion in clinical trials.

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2019

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Washington

Address: 1234 Crittenden St NW, WashingtonWeb: Sign in to see organisation websiteEmployees: 5Revenue: 586220ICO: 471822559

DDE Decoding Developmental Epilepsies Delivering Resources Research and Results. Join Us. Sign up with your email address to receive news and updates. Delivering Resources Research and Results to Families with Profound Genetic Epilepsies and SCN8ARelated Disorders.

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Lucy

Incredible work being done here! It’s heartwarming to see the community come together to support families facing these challenges. Let’s keep pushing for answers and hope! 💙🙏

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Lucas

So grateful for all the resources and support your organization provides! Together, we can make a difference for those dealing with SCN8A and DEEs. Count me in for updates! 🌟💪

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Andrea

1. What innovative strategies can NGOs implement to improve access to care and resources for families affected by SCN8A-related disorders and developmental epileptic encephalopathies (DEEs)?

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John

2. How can collaboration between researchers, healthcare providers, and families enhance the understanding and treatment of ultrarare genetic conditions like SCN8A-related disorders?

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Washington

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