Cover art for podcast Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation

Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation

24 EpisodesProduced by Rare Genomics InstituteWebsite

We talk to rare disease experts about treatments, trials, and new developments, and rare disease patients share their experiences and advice for staying positive in the face of diagnosis. Learn more about the community, and how you can get involved. Get in touch if you are an expert or… read more


Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research

Being born with, and growing up with a rare disease means you don’t necessarily know any other way of life. This month we spoke with 23-year-old Anna Laurent, who was born with Alagille Syndrome, and as she grew up, she gradually learned about what that meant, and how her life was different from other kids’ lives. She tells us about her symptoms and treatment experiences, participating in research, and her involvement with rare disease advocacy. Anna also recently graduated from college so she tells us about her new job! Visit to find your community.

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