Meet the Advisory Team
PRA has created the first Rare Diseases Advisory Committee (RDAC) a group of nine experienced patients, parents, caregivers and advocates from diverse backgrounds who came together to work toward better understanding the needs of the rare community and the ways in whichclinical trials can be more effective and accessible to that community.
Founder & Director of rideATAXIA & Spokesperson for FARA
Kyle Bryant is the founder and director of the bicycle ride fundraiser, rideATAXIAfor the Friedreich's Ataxia Research Alliance (FARA). Ride Ataxia currently has 6 locations and has raised over $7 million for FA research since 2007.
Tracy Dixon-Salazar, PhD
Director of Research & Strategy, LGS Foundation
Dr. Dixon-Salazar is a neuroscientist, geneticist, and, patient advocate. Her desire to get her Ph.D. was inspired by her daughter who developed Lennox-Gastaut Syndrome (LGS) at the age of 2.
Maureen McArthur Hart
Strategic Advisor, Global Genes
Maureen McArthur Hart is a strategic planning and communications leader with experience in structuring biomedical research collaborations with engagement of multiple stakeholders, accelerating biomedical innovation, ensuring ethical conduct of research, and developing outreach materials to varied audiences.
President & Co-Founder Lipodystrophy United, Professional Patient Advocate & Rare Leader
Andra Stratton is an advocate for the global lipodystrophy community. She has led the efforts to increase awareness and support among patients for all types of lipodystrophy around the world since co-founding Lipodystrophy United in 2012.
Founder of KIF1A.org and Vice President of Patient Engagement & Government Affairs, Ovid Therapeutics
Luke and his wife, Sally, started KIF1A.org, a nonprofit organization working to discover treatment for KIF1A in 2016 when their daughter was diagnosed with this rare neurological disease.
Principal Consultant, Rarallel, LLC and Metachromatic Leukodystrophy Parent Advocate
Price is a mother of eight, a prevention psychologist, a researcher and a rare disease advocate. Amy has four children impacted by rare disease, including two who underwent gene therapy in Italy for Metachromatic Leukodystrophy.
Terry Jo Bichell
Founder & Director of COMBINEDBrain
Terry Jo Vetters Bichell was the founding Director of the A-BOM Alliance from 2016-2018. Dr. Bichell earned a PhD in neuroscience from Vanderbilt University in 2016, studying gene-environment interactions in Huntington’s disease rodent models, but she has been involved in Angelman research since 2000, when her son, Lou, was diagnosed with the disorder.
About the Community Platform
The rare disease landscape is growing and changing rapidly. Not only are more drugs and therapies being approved, but more rare diseases themselves are being discovered and more companies are investing in research and communities.
Communities comprised of patients, families, caregivers, and clinicians, determined to improve how rare affects their everyday lives. Communities like this one.
The goal of this platform is to connect members of the rare disease community more efficiently, enabling them to discuss advocacy initiatives, challenge-solving ideas, and ways to stay involved in the drug development process.Join The Rare Together Community forum