Last year, I had the incredible opportunity to co-present at the 2017 Medicine Ed X conference at Stanford University in California. The innovative ideas that were being presented were so exciting and encouraging, yet they were mostly geared towards those with common physical and mental health … [Read more...] about Medicine X 2017: Building Disease Specific Educational Tools and Resources
childhood rare disease
5 Steps to Becoming A Rare Disease Parent Advocate
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
Hope, Loss, and Survival
Our Little Miss Hannah Foundation hosted our first annual Vegas Cares About Rare Kids 5K on February 25, 2017. It was an amazing success not only by the turnout of over 500 people in attendance, but by the opportunity to introduce our community to 21 rare kids in our area. Our Little Miss Hannah … [Read more...] about Hope, Loss, and Survival
Spotlight – Sandra Sermone
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. Sandra Sermone Parent Advocate | ADNP Syndrome About Sandra: … [Read more...] about Spotlight – Sandra Sermone
