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.
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of scientists, clinicians, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies—a group of rare, primarily inherited neurological disorders. Here, program manager Omar Sherbini, MPH, shares the history of the consortium, current research, and future plans.
Challenges in conducting clinical research in the midst of the COVID-19 pandemic are spotlighted in an article from three consortia of the Rare Diseases Clinical Research Network (RDCRN). Their contribution was featured in the latest issue of Rare Neurological Diseases Special Report.