Written by Robert Ostrea This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was … [Read more...] about My Rare Disease Week in DC 2018
Advocate Spotlight
Spotlight – Mindy Youngs
It’s time to let the world get to know our amazing rare advocates! Each month 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. Mindy Youngs Parent Advocate | GAND About Mindy: Oxnard, CA … [Read more...] about Spotlight – Mindy Youngs
Spotlight – Bo Bigelow
It’s time to let the world get to know our amazing rare advocates! Each month 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. Bo Bigelow Parent Advocate | USP7-Related Diseases About Bo: … [Read more...] about Spotlight – Bo Bigelow
Spotlight – Lisa Deck
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. Lisa Deck Patient Advocate | Stroke/Moyamoya Disease About Lisa: … [Read more...] about Spotlight – Lisa Deck
Spotlight – Taylor Gurganus
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. Taylor Gurganus Parent Advocate | Bohring-Opitz Syndrome About … [Read more...] about Spotlight – Taylor Gurganus
Spotlight – Mary Elizabeth Parker
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. Mary Elizabeth Parker Advocate | Undiagnosed Community About Mary: … [Read more...] about Spotlight – Mary Elizabeth Parker
