On the 8th Day of Rare Christmas Phoebe wants you to know....February 24-February 28th is Rare Disease Week on Capitol Hill. What is Rare Disease Week? It is a week where patients, caregivers and advocates come together to give Rare Diseases a voice with Legislatures. Rare Disease Legislature Advocates Website states "Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. All events are free for patients, caregivers and other advocates but advance registration is required for each event." Though we have not been able to attend Rare Disease Week in person, we have sent Phoebe's story down with advocates to be shared with legislators. If you are interested in learning more about Rare Disease Week on Capitol Hill, you can visit https://rareadvocates.org/rdw/. On this site you can read about the schedule of events for the week, as well as register to attend.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.