Maryland
State Ambassador: Rebecca Xu
Rebecca Xu is a recent graduate from Johns Hopkins University, where she started its first rare disease club, JHU 4Rare, a NORD Students for Rare chapter, after being inspired by her mother who developed Immune Thrombocytopenic Purpura (ITP), a rare platelet disorder. She has been a researcher in the Harris Lab at Kennedy Krieger Institute for three years, studying rare neurodevelopmental disorders such as Kabuki syndrome and Rubinstein-Taybi syndrome. She has also been serving her community as an advocate by tabling at the Northeast Market for family history and rare disease awareness, and by helping plan and organize multiple Rare Disease Day events. Rebecca’s goal is to engage with the broader Maryland rare disease community to bring a sense of community as well as awareness and change regarding access to resources and patient-centered care.
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.
