Reflections from a ‘RAD’ Workshop By Kelly Muzyczka, Program Manager with the SCN8A Alliance I recently had the opportunity to join 25 other patient advocacy groups, in my role with the International SCN8A Alliance at the Rare Advocacy Development (RAD) Workshop—a two-and-a-half-day deep dive into the world of rare disease advocacy, with a special focus […]
Reflections from a ‘RAD’ Workshop Read More »
We are honored to be selected as one of 30 rare disease non-profit organizations to receive the Rare As One Network grant, made possible by the Chan Zuckerberg Initiative DAF, an advised fund of Silicon Valley Community Foundation. This is a five-year, $800,000 grant that provides extensive support, including training, mentoring, capacity building, research, and
SCN8A Alliance Awarded CZI Grant to Advance Our SCN8A Clinical Research Network Read More »
Exciting Progress in SCN8A Research: Positive Initial Results from the Praxis EMBOLD Study We are pleased to share an update from Praxis Precision Medicines regarding the EMBOLD study, which has shown some initial promising results in SCN8A and SCN2A developmental and epileptic encephalopathy (DEE) patients. These findings are exciting as we know there is substantial
Exciting Progress in SCN8A Research: Positive Results from the Praxis EMBOLD Study! Read More »
– Keep Exploring –
IMPORTANT: While this consensus data provides new and valuable insights about best practices in the diagnosis and treatment of SCN8A, this is not medical advice. It can inform clinicians and caregivers alike in developing optimal treatment plans for each individual.
