As a patient advocate for both Alport Syndrome Foundation and the National Kidney Foundation, Grant has advocated on Capitol Hill for legislation to support kidney disease patients, served as a featured speaker for an NKF dinner for patient advocates, and participated in a Patient Focused Drug Development meeting with the FDA. He has also spoken to pediatric nephrologists and medical students at Cleveland Clinic, sharing his insights as a young adult living with chronic kidney disease.
As a Program Manager at Global Genes, Hira manages RARE programs for patients, families, and foundations. In prior roles, Hira collaborated across various sectors and disciplines to support health improvement and promote community well-being across the globe. Hira received her masters degree in Public Health in Community-Oriented Primary Care from George Washington University, masters in Medical Sciences from the University of North Texas, and BA in Biochemistry and Sociology from Austin College.
As Chief of Policy & Advocacy at the EveryLife Foundation for Rare Diseases, Annie Kennedy is focused on improving health outcomes for people living with rare diseases. Annie is committed to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. Previously Annie served within the community for nearly three decades through her roles with Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA).
Parvathy Krishnan is Director of Patient Engagement for the Rare Disease Innovations Institute (RDII). Parvathy is a rare disease patient with Lynch syndrome, as well as a mother of two medically complex children with rare and ultra rare diseases. Since her children’s diagnoses, Parvathy has served as both Chair and co-chair of the University of North Carolina Patient Family Advisory Board. Parvathy is a seasoned speaker, panelist, and writer for rare disease advocacy and clinical education.
Shannon manages the Rare Disease Legislative Advocates program at the EveryLife Foundation for Rare Diseases, where she works with advocates from across the country to engage at the local, state, and federal level. Shannon has worked with national nonprofit organizations to further their policy and advocacy goals, including the Juvenile Diabetes Research Foundation and National Osteoporosis Foundation. She received her Master of Public Policy from American University.