Clinical TrialsParticipating in clinical trials is an important way to help accelerate therapeutic development. Stay up to date about current and future opportunities below.
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Annual GatheringConnect in person with other SCN8A families and learn about current research by attending the Annual SCN8A Clinician, Researcher, and Family Gathering each December.
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ResourcesHaving a new diagnosis can be overwhelming. We have compiled a list of many different resources to help you find the equipment and support you might need.
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Praxis announces positive topline results from the EMBOLD study“I can’t help but smile today as I fully absorb the press release from Praxis Precision Medicines about the positive phase 2 EMBOLD study topline results for the drug relutrigine. These remarkable findings show significant improvements in seizure reduction and severity, along with encouraging signs in clinical assessments, including improvements in disruptive behavior, communication, and alertness. For families without any approved treatment options, this drug brings profound hope and could potentially change the course of disease management. I’m eager to see the next steps unfold as we continue to work together as a community for a better tomorrow.”
- Kacie Craig, Executive Director, The Cute Syndrome Foundation |
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Shedding Light on SCN8A: 8th Annual International SCN8A Awareness Day
February 9, 2024, marked an important occasion for the global community, particularly for those whose lives have been touched by SCN8A, a rare disorder that often operates in the shadows. International SCN8A Awareness Day, observed under this year’s theme #IfYouOnlyKnew, served as a poignant reminder of the challenges faced by individuals affected by this condition, which impacts less than 1,000 people worldwide... |
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