Is 'Patient-Centered' enough for medically complex patients & families participating in clinical trials or new treatments?
Article from mejo
Newborn Screening and Genetic Testing Could Increase the Reach of the Orphan Drug Act
Article from Rare Disease Advisor
Summary – Policy Panel: "360 view: How do we improve access while we continue to promote innovation"
Post from Americas Health Foundation
Highlights – Policy Panel: "360 view: How do we improve access while we continue to promote innovation"
Post from Americas Health Foundation
Accelerating Delivery and Patient Access to Rare Disease Treatments – Highlights from World Orphan Drug Congress
Article from Parexel
Alterity Therapeutics Presents New Data Demonstrating Potential of ATH434 to Treat Rare Neurodegenerative Disease Friedreich’s Ataxia
Article from Alterity Therapeutics
Missing Link Between Approval, Access, and Adoption of Rare Disease Treatments Continues to Negatively Impact Patient Care
Article from NAVLIN DAILY
Rare Disease Community Must be "Proactive" When Engaging with State Medicaid Agencies
Article from NAVLIN DAILY
Legislation Could Improve Access to Specialized Pediatric Health Care
Article from Rare Disease Advisor
Sickle Cell Disease Patient Advocate Calls for Patient-Centered Care
Article from Rare Disease Advisor
A Call to Action Newborn Screening Now
Presentation from Alice McConnell, CEO & Co-Founder, Speragen
Unlocking Clinical Trial Recruitment Success: BioNews Presents at World Orphan Drug Congress 2024
Press Release for BioNews Clinical
Joining the Discussion: The Rare Disease Translational Center Attends the 2024 World Orphan Drug Congress
Video from The Jackson Laboratory
FDNA and Genome Medical Improve Access to Critical Diagnostic Services for Children in Medically Underserved Areas
Press Release from FDNA & Genome Medical