Patient Advocate Spotlight: Erica Barnes Fights for Children with Metachromatic Leukodystrophy and Other Rare Diseases Dakota Campbell Tue, 08/30/2022 - 10:40
Headshot of Erica Barnes, MS, CCC-SLP

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.

Consortium Spotlight: Advancing Discoveries in the Leukodystrophies Dakota Campbell Tue, 08/23/2022 - 09:23
Global Leukodystrophy Initiative Clinical Trials Network logo

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.

Rare Disease Research Challenges, Opportunities Due to COVID-19 Featured in New Article sheila.wolfer@… Tue, 05/04/2021 - 12:40
Rare Disease Research Challenges, Opportunities Due to COVID-19 Featured in New Article

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.