I will be spending the day at the National Institutes of Health, checking out the Rare Disease United Foundation’s Beyond the Diagnosis art exhibit, touring the facilities and speaking with researchers. In the evening I’m set to attend a cocktail reception and documentary screening.
Today is my second rare disease day as a patient and completely different from my last one. Now I feel a sense of authority over my disease, the new normal I have created and my spot in working toward change for our community. The game is totally different now, I am not looking to play along, I am working on my own projects.
Wednesday is when I will be on the hill, but at the moment my schedule is uncertain as I have been asked to participate in a few exciting projects. Follow my Instagram and Twitter pages for up-to-the-minute updates on what’s shaking in DC. And if you’re a VC reading this, let’s chat.
If you see me out and about, please come and say hi. My hair will stand out, I promise you can’t miss me (and I don’t bite).
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.
Discussing the OPEN ACT with Congressman Bilirakis
I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.