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.