Rare Disease Day 2011: Research, Action and Impact
• February 27, 2011 • Leave a CommentPosted in Uncategorized
Tags: Catherine Calhoun, children's rare disease network, children's rare diseases, e-Patient Dave DeBronkart, Extraordinary Measures, Focal Segmental Glomerulosclerosis, Global Genes Project, Global Rare Diseases Patient Registry, howard liebers, inspire, John Crowley, Julie Gidion-Smith, kakkis everylife foundation, Kidney Disease, marbleroad, National Kidney Foundation, Office of Rare Diseases Research, orphan drugs, PhRMA, rare disease, Rare Disease Legislative Advocates, RDLA, regina holliday, VHL Family Alliance, World Kidney Day 2011, World Rare Disease Day
Ideas for Change: A Registry of Registries
• March 19, 2010 • Leave a CommentPosted in Uncategorized
Tags: 25 million+ It is time to care about rare disease, barack obama, change, change.org, disease, health, health reform, healthcare, healthcare reform, ideas for change in america, marbleroad, obama administration, orphan drug, Orphan Drug Act, orphan drugs, patient, rare, rare disease, rare diseases, reconciliation, reform, registry, undiagnosed