Dynamic teams of physicians, researchers, patients, and patient advocates work together in each RDCRN consortium to advance rare diseases research. This page collects feature articles highlighting both the work of the RDCRN consortia and the people behind that work. Choose the consortium acronym at the top of the page to view features articles related to that consortium.
Patient Advocate Spotlight: Erica Barnes Fights for Children with Metachromatic Leukodystrophy and Other Rare Diseases
August 30, 2022
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…
August 23, 2022
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of scientists, clinicians, industry stakeholders, and patient…