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March 8, 2018 by carrie

ARTICLE: From Rare Diagnosis to Fierce Advocacy

Robert, Hannah, and Carrie on Hannah’s Make-A-Wish trip to Disney World

Thank you Coriell Institute for Medical Research for sharing our family’s story and why we are so passionate about working towards change in our #raredisease community!

“Advocacy can give patient families – families who have been dealt an often life-changing diagnosis – an opportunity to take charge of their situation, participate in research, and focus on the possibility of a better future for those affected by these diseases. Perhaps no patient advocate represents this better than Carrie Ostrea.”

Click here to read the full story

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Filed Under: Advocacy, Personal Tagged With: advocacy, Carrie Ostrea, Coriell Institute, Hannah Ostrea, Make-A-Wish, Robert Ostrea

About Carrie

Carrie Ostrea, principal in Ostrea Consulting LLC, is a rare disease advocacy strategist working with nonprofit and industry organizations in the rare disease space. She is also the Executive Director and Co-Founder of the Little Miss Hannah Foundation, a 501(c)3, non-profit organization which was created to honor her 3-year-old daughter, Hannah, who lost her battle to Gaucher Type 2/3, an ultra-rare genetic disorder. 

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Email: carrie@ostreaconsulting.com

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10624 S. Eastern Avenue #A847
Henderson, NV 89052

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