Decoding Developmental Epilepsies

DDE

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.
471822559
IČO
2019
Založeno
Washington, DC 20011-4431 USA
Adresa
ddecoding.org
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Poslední komentáře

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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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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Poslední diskuze

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)?
Odpovědí: 3, Naposledy před 1 den detail
2. How can collaboration between researchers, healthcare providers, and families enhance the understanding and treatment of ultrarare genetic conditions like SCN8A-related disorders?
Odpovědí: 3, Naposledy před 1 den detail

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