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
Advocacy
Sisterhood of the Traveling Advocates
Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease. Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard. But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates
My Passion for Advocacy
One of the most fulfilling things for me since Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community. I've had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of … [Read more...] about My Passion for Advocacy