2020 Speakers

Gus M. Bilirakis
Congressman, Florida’s 12th Congressional District

Republican Congressman Gus M. Bilirakis represents Florida’s 12th Congressional District. Gus serves on the Energy and Commerce Committee and Veterans’ Affairs Committee. He is the Ranking Member of the VA Economic Opportunities Subcommittee, as well as a member of several other Subcommittees. With 27 bills he authored signed into law, Congressman Bilirakis was recently named the Most Effective Lawmaker in the State of Florida by the Center for Effective Lawmaking at Vanderbilt University.

Grant Bonebrake
YARR Member

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.

Hira Chowdhary
Program Manager (Engagement Programs), Global Genes

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.

Parvathy Krishnan
Director of Patient Engagement, Rare Disease Innovations Institute (RDII).

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 von Felden
Director of Rare Disease Legislative Advocates, EveryLife Foundation for Rare Diseases

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.