Maryland
State Ambassador: Rebecca Xu
Contact: [email protected]
State Ambassador: Jeneva Stone, PhD
Jeneva Stone has been a fierce advocate for the rare and undiagnosed community since 1998, when her son Rob's then unknown genetic illness presented suddenly. After a 14-year diagnostic odyssey, she learned that Rob has an ultra-rare form of dystonia-parkinsonism, DYT-PRKRA, and he is the only reported case in the U.S. As a result, Jeneva and her son Rob have plunged themselves into advocacy to ensure that people with rare diseases and disabilities get the supports and services they need, advocating at both the state and federal levels.
Contact: [email protected]
Events in Maryland
Are there events for the rare disease community happening in your state? Email [email protected] to share your event with us.
