cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill


cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill

cureCADASIL Trustee and tireless volunteer Janice Ragazzo attended Rare Disease Week on Capitol Hill 2016 events hosted by RDLA in Washington, DC to spread awareness of CADASIL to our members of Congress. During this exciting week, rare disease community members from across the country learned about federal legislative issues, met other advocates, and shared their unique stories with legislators. In addition, this year Janice delivered letters written by various CADASIL patients to their state’s representatives. Everywhere she goes, Janice displays the cureCADASIL logo in photos.  Janice is also working with NY Representative Maloney’s office to promote CADASIL being added to the medical diagnosis ICD-10 code.  Thank you Janice!  Below is a photo of Janice in action (look for the woman holding a CADASIL sign to the right by the wall!) and a video highlighting this wonderful event.

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