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Joyce speaks with Margaret Downs and Mathew Call of Premiere Visual Voice, about Caption Companion, an 8 inch tablet that automatically captions the conversation.

Caring for someone with a rare disease can feel like navigating a labyrinth. Reach out, seek help, and prioritize self-care. Your role is invaluable, and with the right tools and support, you can navigate this path with confidence. And never forget that your role as caregiver is to support the patient in meeting the patient's goals, whether or not they are the same as your own.

Community support plays a crucial role in the lives of families affected by rare diseases. Together, we can build a supportive community that uplifts and empowers those facing the challenges of rare diseases.

Complex conditions often involve multiple symptoms, require interdisciplinary care, and can significantly impact a patient's quality of life. Reach out, seek help, and advocate for your needs. The path may be challenging, but with the right tools and support you can navigate it successfully.