Ostrea Consulting LLC

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Thank you Henri Termeer

It seems that almost everyone in the rare disease community has a personal story about Henri Termeer. Here is mine —

A few years ago at the Global Genes gala, my husband (Robert Ostrea, MBA) and I were seated at Henri Termeer’s table because of our connection to the Gaucher community. I will admit being completely intimidated at that thought of this because here I was, a relative newbie in the rare disease advocate space, sitting at the table of one of the most influential people in the community! That quickly disappeared when we started talk to Henri and his family – they were genuinely interested in learning about our Hannah and what we were doing in the Gaucher type 2/3 community. He also shared some anecdotal stories about his history with Gaucher and stories unrelated about his family.

Thank you Henri for the work you have done in our Gaucher community and for the greater rare disease community. Because of the work you so passionately spearheaded, we were able to give our daughter, Hannah, a greater quality of life while she was here with us.

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.