Earlier this month I had the opportunity to attend the Global Genes RARE Patient Advocacy Summit. It was a little surreal, I am used to introducing PACS1 as a “rare” syndrome and at this Summit  we all were rare. We all had similar journeys and stories. From misdiagnosis to undiagnosed for years. The breakout sessions were beyond informative and I will add all that I learned to my Bridget toolbox.

Yet it was the Keynote Speaker Rachel Callander‘s words that have stayed with me. “What’s your child’s superpower?”. It reminded me of a blog post I had written in 2013. This time of year, more than any, I need that reminder. Continue reading →