I am headed up to Washington, DC on Sunday for Rare Disease Week. I am excited to be able to meet with a lot of different groups to work on legislation for the 30 million of us fighting these disorders.
Last year was about me, I was focused on what I went through. This year is about YOU, the patient, the caregiver, the healthcare provider, the researcher. Now we have to work on unity between everyone involved in the rare disease space. We need to see to it that the 21st Century Cures bill is signed into law as soon as possible.
I expect this trip to be quite different, as I have found myself at peace with what life has thrown at me.
If you’re going to be in DC and at the events, I would love to meet you. Tweet me @RareCandace and let me know what you’re up to.