When your lifestyle becomes overwhelming because you are caring for a medically complex child, the idea of becoming a rare disease advocate becomes daunting. "How do I add advocating for my child's rare disease community when I can barely keep my head above water?" is something I hear all the … [Read more...] about 5 Steps to Becoming A Rare Disease Parent Advocate
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
Spotlight – Angie Urbano
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. Angie Urbano Parent Advocate | Blount's Disease About Angie: … [Read more...] about Spotlight – Angie Urbano
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 … [Read more...] about Thank you Henri Termeer
