Join our community for NF Power Hours, a series of free online events designed to bring expert knowledge directly to you. These sessions offer valuable insights and practical advice on living with neurofibromatosis and schwannomatosis. It’s a space to learn, connect, and feel empowered. They MAY be recorded, but not always.
Upcoming Power Hours
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Productive Conversations with Healthcare Providers (English)
This program describes the components of productive conversations, such as preparation, organization, and framing of thoughtful questions. It examines ways to make conversations productive with physicians and other members of the care team. Presented by…
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Conversaciones constructivas con los profesionales (Español)/Productive Conversations with Healthcare Providers
Este programa describe los elementos que conforman una conversación productiva, como la preparación, la organización y la formulación de preguntas bien planteadas. Analiza cómo lograr que las conversaciones con los médicos y otros miembros del…
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Common Medical Terms on the Patient Journey (English)
This program introduces key medical terms, tests, procedures, and clinical trial concepts related to rare disease care, while helping patients and caregivers prepare for healthcare visits and communicate with confidence. Presented by Joe Booe from Alexion.Joe Booe is a…
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Términos médicos habituales en el proceso asistencial del paciente (Español)/Common Medical Terms on the Patient Journey
Este programa presenta términos médicos clave, pruebas, procedimientos y conceptos relacionados con los ensayos clínicos en el ámbito de la atención a las enfermedades raras, al tiempo que ayuda a los pacientes y a sus…
Past Power Hour Recordings
We frequently record Power Hours and make them available for public viewing, but this is not always the case. Some will be available here.