Erica Barnes, MS, CCC-SLP, is the co-founder of Chloe’s Fight Rare Disease Foundation (CFRDF), a patient advocacy group that supports research to find and implement effective cures and treatments for rare childhood genetic diseases. She also serves as a board member of Cure MLD, state ambassador of the Minnesota RareAction Network, and advocacy committee chair of the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN). Here, she shares her journey to rare disease advocacy, impactful work by CFRDF, and collaboration with GLIA-CTN.
Kristin Anthony is president and founder of the PTEN Hamartoma Tumor Syndrome Foundation, a patient advocacy group of the Developmental Synaptopathies Consortium (DSC) that aims to find treatments or a cure for PTEN hamartoma tumor syndrome (PHTS). She is also the new chair of the Rare Diseases Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups (CPAG). Here, she shares her start in rare disease advocacy, exciting work with the PTEN Foundation and DSC, and goals as the CPAG chair.
Connie Lee, PsyD, is president and CEO of the Angioma Alliance and a member of the Brain Vascular Malformation Consortium (BVMC). She is also a licensed clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Here, she shares her start in patient advocacy, current work, and future goals.
Tracy Hart, chief executive officer of the Osteogenesis Imperfecta Foundation, serves as chair of the RDCRN’s Coalition of Patient Advocacy Groups. Here, she talks about her work as a rare disease advocate, the founding of the Brittle Bone Disorders Consortium (BBD), and their work in rare disease patient advocacy and research.