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Anna Laurent on Alagille Syndrome and Her Road to Advocacy

Once Upon A Gene

Anna Laurent on Alagille Syndrome and Her Road to Advocacy

ONCE UPON A GENE - EPISODE 036
June 25, 2020

Anna Laurent on Alagille Syndrome and Her Road to Advocacy

Anna Laurent on Alagille Syndrome and Her Road to Advocacy

My guest today has a rare genetic disorder called Alagille Syndrome, which she was diagnosed with at 6 months old with no prognosis. Anna Laurent is a vivacious 20 year old living her best life. She’s the Head of Programs & Initiatives at Our Odyssey where she helps to empower young adults impacted by chronic and rare diseases. If you know a young person with a chronic or rare disease, tell them to check out Our Odyssey. 

EPISODE HIGHLIGHTS

Can you share some of the excitement you’ve had in your life over the last 6 months?

Tell us your story and about the diagnosis you were given as a child.

What was it like growing up with a rare disease?

What led you to become an advocate and to help other young people?

What has been one of your most moving experiences so far?

Do you have any advice for parents?

LINKS AND RESOURCES MENTIONED

Our Odyssey

https://ourodyssey.org/

Alagille Syndrome Alliance 

https://alagille.org/

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