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 … [Read more...] about Thank you Henri Termeer
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Spotlight – Jocelyn Duff
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Jocelyn Duff Parent Advocate | Charcot Marie Tooth Disease Type 4J … [Read more...] about Spotlight – Jocelyn Duff
Spotlight – Gay Grossman
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. E. Gay Grossman Parent Advocate | ADCY5 About Gay: San Diego, … [Read more...] about Spotlight – Gay Grossman
Spotlight – Andrea Taylor
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Andrea Taylor Advocate | Arterial Tortuosity Syndrome About Andrea: … [Read more...] about Spotlight – Andrea Taylor
Bringing Rare Disease to Stanford University’s #MedX
I'll be honest. I had no idea what to expect when I was headed to MedX this weekend. What I did know is that an abstract that my rare friends and I put together was accepted, and we were to present it at Stanford University's MedX Program. Me. A rare mom. Talking about Hannah, Gaucher Disease, … [Read more...] about Bringing Rare Disease to Stanford University’s #MedX
Spotlight – Shannon Burkoth
It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here. Shannon Burkoth Patient Advocate | Narcolepsy About Shannon: … [Read more...] about Spotlight – Shannon Burkoth
