#Path2Cures created to promote rare disease advocacy
Congress faces the decision to pass the 21st Century Cures Act into law. Doing this could help countless U.S. patients suffering from rare diseases find more treatment options.
Sharon Rose, a patient who has a rare disease, is one of countless patient advocates who has changed their Twitter profile to support 21st Century Cures. For the past six years, Rose has looked for options that could help her treat four rare diseases.
Recently, Rose chose to become a patient advocate. Her story is shared in The Mighty, which outlines her interest in what Congress does and how legislation works to help rare disease patients gain more treatment options.
“I was in a new arena and out of my comfort zone,” Rose said. “However, I realized that in order to advocate for my care, it was a necessary step -- and I was finding it interesting.”
For Rose, the biggest challenge was holding a meeting with her local representatives in Congress.
“The idea of walking into a government office makes me so nervous, but so does a future without proper health care for the conditions I face daily,” she said.
Organizations in this story
U.S. House Committee on Energy and Commerce 2125 Rayburn House Office Building Washington, DC 20515