1 episode

Realizing that rare disease will be a part of your life for the rest of your life can be overwhelming - but don't worry, you have a village to help you. The Rare Village is all about living your best rare life, learning from the tribal knowledge of the rare disease community. Together will share our stories, joy and pain, and above all amazing resources from the rare disease community to help you live your best rare life. After all, it takes a village to raise a rare family, and together, we are THE Rare Village.

The Rare Village Podcast Gina Hann

    • Kids & Family
    • 5.0 • 4 Ratings

Realizing that rare disease will be a part of your life for the rest of your life can be overwhelming - but don't worry, you have a village to help you. The Rare Village is all about living your best rare life, learning from the tribal knowledge of the rare disease community. Together will share our stories, joy and pain, and above all amazing resources from the rare disease community to help you live your best rare life. After all, it takes a village to raise a rare family, and together, we are THE Rare Village.

    Episode 1: Rare Disease Day and The RARE Village

    Episode 1: Rare Disease Day and The RARE Village

    It's #rarediseaseday2020! What does that mean to you? As a newly diagnosed rare family member you might ask yourself, how can I get involved? This episode of RARE Village will introduce the Top 5 ways to get involved on rare disease day - ANY rare disease day! Join us as we share our favorite ways for you to embrace your role in rare disease advocacy as someone who cares about rare. You've got this. In this episode we talk about Rare Disease week on capitol hill, about NORD, and about making rare disease your own. Follow us on instagram and Facebook @therarevillage

    We reference the following websites:
    https://rareadvocates.org/rdw/
    https://rarediseases.org/event/rdd-mission-2020/
    https://battenhope.org

    • 22 min

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