Noah Siedman is a rare sibling and advocate who became a part of the rare disease community when his younger brother, Ben, was diagnosed with Sanfilippo Syndrome. Years of fundraising, advocating and speaking about Ben and his own experience, Noah has been working to share insights from the patient experience for his whole life. As an advocate he takes a data driven, strategic approach to the rare disease experience while still taking the time to speak on his personal experience as a sibling.